What is the connection between cancer and autoimmune encephalitis?

by Alanna | Nov 28, 2023 | PennNeuroKnow

November 29, 2023 | by Sophie Liebergall and Ayan Mandal, PennNeuroKnow and IAES Collaboration

A message from IAES Blog Staff:

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

—-

Introduction

When a patient is admitted to the hospital with symptoms that suggest a diagnosis of autoimmune encephalitis (AE), doctors start ordering a dizzying array of lab tests and scans. Although AE is a disease of the brain, many of these tests, such as CT scans of the chest or ultrasounds of the pelvis, don’t seem to have much to do with the brain at all. The purpose of these scans is to search for a tumor that lies somewhere in the body. The reason why doctors conduct this search for a tumor is because some AE patients have a subtype of the disease, called paraneoplastic encephalitis, in which their disease is actually caused by a tumor outside of the brain. In this post we will shed some light on paraneoplastic encephalitis, why it occurs, and how its treatment compares to other types of AE.

What is paraneoplastic encephalitis?

As we explained in a previous post, paraneoplastic encephalitis is a type of AE caused by a tumor somewhere outside of the brain. The symptoms of paraneoplastic encephalitis, which could include seizures, memory loss, confusion, and dizziness, are often the first signs of an underlying cancer.¹ For this reason, a patient who is suspected to have autoimmune encephalitis will often undergo scans of each organ in their body (colloquially called a “pan-scan”) to search for a possible cancer that may be responsible for the patient’s symptoms.

Some malignancies that are especially likely to trigger paraneoplastic encephalitis include cancers of the breast, ovaries, and lungs.² But why would a tumor in one of these organs outside the brain cause the immune system to attack the brain? To understand why, we need to learn a bit about how the immune system responds to cancer.

How does the immune system respond to cancer?

Though it may be an unsettling thought, abnormal cells with the potential to become cancer are born in the body all the time. We tend not to be aware of this because most of the time the immune system successfully squashes these abnormal cells before they become a full-blown cancer. Many scientific experiments have proven how effectively the immune system monitors the body for these cancer cells. For example, when mice are genetically engineered to lack key immune cells, they become much more susceptible to developing tumors – implying that the removed immune cells were necessary to prevent tumor development.³ Because the immune system plays a crucial role in protecting the body from cancer, many cutting edge cancer treatments work by empowering the patient’s own immune system to kill their cancer cells.

The immune system prevents the growth of tumors by reacting to abnormal proteins that are a sign of cancer. Tumors tend to produce mutated proteins that are not found in the healthy body. Once an immune cell sniffs out one of these proteins it hasn’t seen before, it eats the protein and starts sending out alarm bells to other immune cells. These alarm signals tell one set of immune cells, called B cells, to start making antibodies that bind to this suspicious protein. Antibodies function like little flags that mark the cell with the mutated protein for destruction. Specifically, in the case of paraneoplastic AE, the initial alarm bells also activate another set of immune cells called cytotoxic T cells.^4,5 The role of cytotoxic T cells is to expertly survey for cells that have been marked as harmful as potentially cancerous. Then, once they find these potentially dangerous cells, they release toxins that kill the cells (Figure 1).

immune system cancer - What is the connection between cancer and autoimmune encephalitis?

Figure 1. How the immune system responds to cancer. 1. A “first-line” immune cell chews up breast tumor cells, which contain proteins not normally found in breast cells. These proteins are represented as crabs. 2. The “first-line” immune cell realizes that it has eaten a cancer cell and so it sends signals that activate B and cytotoxic T cells. 3. Activated B cells produce antibodies which bind to the crab proteins. At the same time, activated cytotoxic T cells start to look for the cells that are tagged by the antibodies. 4. Antibodies bind to the crab protein in the breast tumor cells. Once the cytotoxic T cells find these tagged cells, they release toxins to kill the breast tumor cells. This figure was created using Biorender.com.

Why do some people get paraneoplastic encephalitis?

Sometimes, tumors produce suspicious proteins that look very similar to proteins also found in the brain. For example, some breast cancers can produce a protein that looks very similar to a protein inside of specific neurons in the cerebellum (a part of the brain important for balance and coordination).⁶ In this way, as the immune system prepares for battle against the breast cancer, sometimes the brain with it’s cancer look-alike cells can get caught in the crossfire. When an immune cell detects the breast cancer cells, it will chew up the proteins in those breast cancer cells, including the ones that look like cerebellum proteins. Because these cerebellum proteins were found inside a breast cancer cell, the immune cell thinks that they are harmful. Therefore, the immune cell will tell B cells to make antibodies targeting the cerebellum protein. At the same it will also tell cytotoxic T cells to kill all cells with the cerebellum protein. When these cytotoxic T cells try to find and kill more tumor cells, they may also try to kill healthy cells in the cerebellum that make the protein.⁷

immune system paraneoplastic - What is the connection between cancer and autoimmune encephalitis?

Figure 2. How the immune system responds to cancer causes paraneoplastic AE. 1. A “first-line” immune cell chews up breast tumor cells, which contain proteins not normally found in breast cells. These proteins are represented as crabs. 2. The “first-line” immune cell realizes that it has eaten a cancer cell and so it sends signals that activate B and cytotoxic T cells. 3. Activated B cells produce antibodies which bind to the crab proteins. At the same time, activated cytotoxic T cells start to look for the cells that are tagged by the antibodies. 4. Because the crab protein is normally found in healthy cerebellum cells, antibodies bind to the crab protein in the cerebellum. Once the cytotoxic T cells find tagged cerebellum cells, they release toxins to kill the cerebellum cells.

What is the difference between paraneoplastic and non-paraneoplastic AE?

In the case of paraneoplastic encephalitis, the immune system is trying to do its job correctly by killing tumor cells, and the harm that it does to healthy neurons is collateral damage.⁷ This is different than cases of non-paraneoplastic encephalitis, where the problem lies within the immune system itself. In non-paraneoplastic AE, the immune system mistakenly decides that proteins that are normally found on the outside of neurons are actually harmful.⁷ (See this previous IAES post for a more detailed explanation of antibodies against proteins on the inside vs. the outside of cells.) In both paraneoplastic and non-paraneoplastic autoimmune encephalitis, the patient’s immune system tells B cells to make antibodies that target a neuronal protein. These antibodies then bind to the target protein in neurons and cause the patient to experience symptoms. However, cases of paraneoplastic encephalitis tend to involve more permanent damage to the neurons and more severe and long-lasting symptoms than cases of non-paraneoplastic autoimmune encephalitis. This is because the tumor also activates cytotoxic T cells in addition to B cells. These cytotoxic T cells are responsible for the increased damage and more severe symptoms in paraneoplastic AE.⁹

	Paraneoplastic Encephalitis	Non-paraneoplastic Autoimmune Encephalitis
Target Protein	Usually intracellular proteins (e.g. Hu, Ma1/2, Ri), sometimes cell surface proteins	Cell surface proteins (e.g. NMDA receptor, GABA_Breceptor, Caspr2)
Age	Mostly older people	All ages
Tumor present	Yes	No
Immune system involvement	Cytotoxic T cells + antibodies	Antibodies
Response to treatment	Treatment less effective	Generally good response to treatment

Adapted from Rosenfeld et al. Neurol Clin Pract. 2012⁸

How is paraneoplastic autoimmune encephalitis treated?

When treating paraneoplastic AE, doctors often use the same therapies that are used for non-paraneoplastic AE.¹⁰The majority of these treatments, such as plasma exchange, IVIg, and rituximab, are aimed at eliminating the antibodies that target the neuronal protein.^10-12 (You can learn more about antibody-targeting treatments in this post.) For patients with non-paraneoplastic AE, once the antibodies are no longer bound to the neuronal proteins their symptoms often go away. But, unfortunately, in the case of paraneoplastic encephalitis, both antibody-producing B cells and cytotoxic T cells are activated.⁹ The cytotoxic T cells can unfortunately do more permanent damage to their neurons than the antibodies alone. Because of this, patients with paraneoplastic encephalitis tend to have poorer responses to treatment when compared to patients with non-paraneoplastic autoimmune encephalitis.¹³

When treating paraneoplastic encephalitis, it is very important to treat the underlying cause of the encephalitis: the cancer.^13-14 When patients receive treatment for their cancer, either in the form of surgery to remove the cancer or chemotherapy drugs to shrink the cancer, they can sometimes see some improvement in their paraneoplastic encephalitis symptoms.¹³ When treating patients with paraneoplastic AE, doctors are often faced with a particular challenge: the immune system serves as both friend and foe. On one hand, the immune system is what is causing the patient’s paraneoplastic AE symptoms. While on the other hand, as discussed above, a strong immune system is important for keeping cancer at bay. As such, doctors often must carefully consider whether they want to give patients drugs that suppress the immune system, especially if the patient is actively undergoing treatment for their cancer.⁹

There are already a number of new therapies on the horizon for paraneoplastic AE that will hopefully improve the symptoms and long-term outcomes of this disorder. For example, understanding the role of cytotoxic T cells in paraneoplastic AE has led scientists to start to test treatments that directly target cytotoxic T cells.¹⁵ Conducting clinical trials in a relatively rare disorder like paraneoplastic AE can be especially challenging. But a growing awareness among physicians about paraneoplastic AE has led to an increased number of patients receiving a proper diagnosis for their neurologic symptoms. Clinical trials that enroll larger numbers of patients with paraneoplastic AE will hopefully hasten the development of more effective treatments.

References:

Overview of paraneoplastic syndromes of the nervous system – UpToDate. https://www.uptodate.com/contents/overview-of-paraneoplastic-syndromes-of-the-nervous-system.
Dalmau, J. & Rosenfeld, M. R. Paraneoplastic syndromes of the CNS. Lancet Neurol 7, 327–340 (2008).
Shankaran, V. et al. IFNgamma and lymphocytes prevent primary tumour development and shape tumour immunogenicity. Nature 410, 1107–1111 (2001).
Raskov, H., Orhan, A., Christensen, J. P. & Gögenur, I. Cytotoxic CD8+ T cells in cancer and cancer immunotherapy. Br J Cancer 124, 359–367 (2021).
Cano, R. L. E. & Lopera, H. D. E. Introduction to T and B lymphocytes. in Autoimmunity: From Bench to Bedside [Internet] (El Rosario University Press, 2013).
Paraneoplastic cerebellar degeneration – UpToDate. https://www.uptodate.com/contents/paraneoplastic-cerebellar-degeneration.
Melzer, N., Meuth, S. G. & Wiendl, H. Paraneoplastic and non-paraneoplastic autoimmunity to neurons in the central nervous system. J Neurol 260, 1215–1233 (2013).
Neumann, Harald, Isabelle M. Medana, Jan Bauer, and Hans Lassmann. “Cytotoxic T Lymphocytes in Autoimmune and Degenerative CNS Diseases.” Trends in Neurosciences 25, no. 6 (June 1, 2002): 313–19.https://doi.org/10.1016/S0166-2236(02)02154-9.
Chaigne, Benjamin, and Luc Mouthon. “Mechanisms of Action of Intravenous Immunoglobulin.” Transfusion and Apheresis Science 56, no. 1 (February 1, 2017): 45–49. https://doi.org/10.1016/j.transci.2016.12.017.
Lehmann, Helmar C., Hans-Peter Hartung, Gerd R. Hetzel, Olaf Stüve, and Bernd C. Kieseier. “Plasma Exchange in Neuroimmunological Disorders: Part 1: Rationale and Treatment of Inflammatory Central Nervous System Disorders.” Archives of Neurology 63, no. 7 (July 1, 2006): 930–35.https://doi.org/10.1001/archneur.63.7.930.
Taylor, Ronald P., and Margaret A. Lindorfer. “Drug Insight: The Mechanism of Action of Rituximab in Autoimmune Disease—the Immune Complex Decoy Hypothesis.” Nature Clinical Practice Rheumatology 3, no. 2 (February 2007): 86–95. https://doi.org/10.1038/ncprheum0424.
Dalmau, Josep, and Myrna R. Rosenfeld. “Update on Paraneoplastic Neurologic Disorders.” Community Oncology 7, no. 5 (May 1, 2010): 219–24.
Gultekin, S. H. et al. Paraneoplastic limbic encephalitis: neurological symptoms, immunological findings and tumour association in 50 patients. Brain 123 ( Pt 7), 1481–1494 (2000).
Bastiaansen, Anna E M, Adriaan H C de Jongste, Marienke A A M de Bruijn, Yvette S Crijnen, Marco W J Schreurs, Marcel M Verbeek, Daphne W Dumoulin, Walter Taal, Maarten J Titulaer, and Peter A E Sillevis Smitt. “Phase II Trial of Natalizumab for the Treatment of Anti-Hu Associated Paraneoplastic Neurological Syndromes.” Neuro-Oncology Advances 3, no. 1 (January 1, 2021): vdab145.https://doi.org/10.1093/noajnl/vdab145.

Figures 1 and 2 were created using Biorender.com.

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Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

5 Ways to Answer “How Can I Help”

by Alanna | Nov 21, 2023 | Hot Topics

November 22, 2023 | By Michelle Seitzer of Caregiving Advice

A message from IAES Blog staff:

In the US, Thanksgiving Day and week are upon us. And we have much to be thankful for. For those within the AE community, we cannot thank all those that care for us, in any capacity, enough! As we round out Caregiver Awareness month and head into a holiday season of joy, peace, and grace, may we all continue to be aware and be thankful for all we have been given.

Michelle Seitzer founder of Caregiving Advice has graciously offered to let us share her article regarding ways to help those that care for us the most. We hope you find this as informative as we have!

She offers wonderful tips, and many ways caregivers can be cared for!!!

——-

Want to help a caregiver whose life is busy, busy, busy? Here’s how!

During this week’s Coffee Chat—our brand new virtual support group that takes place Mondays at 11ET on Instagram Live—we talked about what kind of help is actually helpful for caregivers, and why it’s so hard to get it.

We first posted this article in February 2020, right before the world shut down. How times have changed since then! But the advice we shared here? It hasn’t changed at all. Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.

Because it feels like more work.

When caregivers hear these age-old phrases—“How can I help?” or “Let me know if I can do anything!”—our initial internal reaction is STRESS. Because the thought of coming up with helpful tasks feels like extra work, and extra work is something no caregiver wants. We want someone to lighten our load, not add to it!

Now don’t misunderstand: We are generally thankful for the offers. We appreciate that you see our need for help and want to provide it. But we need you to make it a little easier for us. And sometimes, we just need a little more time to think about it! As caregivers, we need to say that. “Thanks for your offer, can I get back to you with some ideas? And can you check in with me in a week if I forget?”

So caregivers, next time someone asks you *THE QUESTION,* refer to these 5 simple suggestions. And if you’re reading this as a person who wants to help a caregiver, thank you for your willingness; we hope you find these ideas helpful!

#1: Bring us a meal.

An oldie but a goodie: make us a meal! Or make a couple of meals for me to stack in my freezer, or send gift cards for GrubHub, UberEATS, or our favorite local pizzeria. Planning meals is often the last thing we want to squeeze into our busy day, which leads to lots of unhealthy dinners like frozen pizzas—or even worse, skipping meals altogether.

#2: Come visit us.

Screen Shot 2021 07 14 at 9.37.57 AM - 5 Ways to Answer "How Can I Help"

Offer to sit with our caree for a few hours while I run errands. Don’t feel comfortable with that? Just stop by for a visit when I’m there (if we’re all up for visitors that day)! Caregiving can be extremely lonely, so it’s a huge help to see friendly faces and welcome visitors! It’s equally as refreshing to have someone take over so I can get a few items checked off my to-do list.

#3: Fill our (gas) tanks.

If you really want to do something of monetary value for us, a gas gift card is always appreciated! There’s a lot of driving involved in caregiving, and it adds up. And financial pressures add to our already heavy caregiving load.

#4: Bring us groceries (treats included).

Screen Shot 2021 07 14 at 9.35.30 AM - 5 Ways to Answer "How Can I Help"

With online shopping now available in almost all areas—and with a variety of pick-up, drive-up or delivery options—this is an easy way to help that makes a HUGE difference!

Think of how much work it is to grocery shop…

It starts with planning: thinking about meals and snacks, then assessing what you need, taking note of what you’ve run out of, and jotting it down.

Then you have to figure out when to go, and depending on your caregiving situation, this can be a logistical challenge. Who can stay with your caree, if they need supervision? Or do you bring the person along, which comes with its own challenges? Some caregivers opt to shop at night when a spouse, partner, or child can stay home with the person you care for—but that often means shopping on tired legs and with a weary mind.

Now that you’ve figured out when to go, you have to drive there, go inside, fill your cart, empty your cart on the belt, load the bags in your cart, bring them out to your car, load them in your car, drive home, bring the bags into the house, then put the groceries away.

And then, of course, make a list of the things you forgot, because that inevitably happens, right?!

When you break down all the steps, you realize how much work is involved—and why it would be SUCH a help for someone to step in on this necessary life activity. (It also makes the case for paying the nominal delivery fee for those services, if you ask me!)

#5: Update others for us.

Offer to update others when something big happens. This one is a little tricky in terms of privacy, but it can still be super helpful.

The key word here is “offer.” Never give updates on my caregiving life without checking with me first. But if you know something big just happened (new diagnosis, a fall, change of living situation or school depending on age, a death or similar big loss/change in the family, etc.), ask me if I could help with letting others know.

Who are those “others?” Those are the people who would love to hear the latest on my caree but don’t necessarily need to hear it from me directly—i.e. my pastor, neighbors, boss/coworkers, friends I haven’t talked to in a while, to name a few.

It’s emotionally exhausting to repeat the same information — especially bad news — over and over again, so having someone offer to take on that task provides a huge sense of relief.

And there you have it! Five simple ways to help a caregiver whose life is busy, busy, busy. Pass this on to others who are looking for ways they can help, and let us know if you’d add anything to this list by commenting below.

Click here or the image below to subscribe to our mailing list:

Your generous Donations allow IAES to continue our important work and save lives!

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

Caregiver’s guide to self care & avoiding caregiver burnout

by Alanna | Nov 8, 2023 | Hot Topics

November 8, 2023 | By the SingleCare Team; medically reviewed by Gerardo Sison, Pharm.D.

November is Caregiver Awareness month! The staff and members of IAES celebrate, love, depend on and, at times, could not get by without those that have cared for us! To say we appreciate you is an understatement. So, this month we celebrate ALL of you wholeheartedly!

Thank you all!

We are honored to share with you a wonderful article by The SingleCare Team and thank them for allowing us this opportunity!

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Learn risk factors, signs of burnout, and how to reduce the danger of caregiver burnout

A caregiver is anyone who assumes a significant level of responsibility for another person. This could be a family member, friend, or home healthcare worker. Caregivers demonstrate selflessness, commitment, and duty every day. But they also take on emotional and physical burdens that can become overwhelming.

What is caregiver burnout?

Caregiver burnout is a state of total exhaustion brought about by the emotional, physical, and mental toll of assuming responsibility for another person’s needs.

How does caregiver burnout start?

In most cases, caregiver burnout begins with emotional exhaustion. The stress and burden of providing for someone’s critical needs can exhaust a person’s ability to cope. Emotions like anger, sadness, and fear can be harder to control than usual.

Physical exhaustion often follows. Caregiving often requires new physical demands and usually leads to a reduction in other physical activities like exercise. One person may feel lethargic because they no longer go on their morning walk. Another person may have sore muscles because they have to bathe and clothe someone else, or sleep somewhere unfamiliar.

The combination of emotional and physical exhaustion can lead to mental exhaustion. A caregiver may begin making simple mistakes like forgetting appointments or leaving a key ingredient out of a favorite recipe. Restful sleep may be difficult, and a caregiver may lack motivation for social interaction. This is when exhaustion has reached the burnout stage.

If caregiver burnout is not addressed, it can lead to caregiver depression—a dangerous situation for the caregiver and the person to whom they are giving care. Depression is often characterized by feelings of worthlessness, sadness, or irritation, which can sometimes lead to chronic negative thoughts of hurting themselves or others.

If you or a loved one is experiencing severe depression or suicidal thoughts and behaviors, seek help from a healthcare provider or emergency room immediately. You can also call the National Suicide Prevention Lifeline at 800-273-TALK (8255).

Why is caregiving so exhausting?

Caregiving is exhausting because of the time and energy it requires. When someone you love can’t entirely fend for themselves, you want to help them. But when you are preparing meals, sorting out their financial situation, or helping them use the bathroom, you are using up energy and hours normally devoted to your own well-being.

In the end, the exhaustion often comes from losing the ability to do things that you enjoy and that make you, you.

What are the risk factors of caregiver burnout?

Not all caregivers get caregiver burnout. But among those that do, researchers have identified certain risk factors that seem to make caregivers more likely to suffer from burnout. Not everyone who has these risk factors will experience burnout, and people who don’t have any of these factors may experience burnout anyway.

Still, it is worth reviewing these risk factors and being aware of any that apply to you.

Physically demanding tasks (i.e., lifting someone out of a bathtub)
Taking care of someone that has severe behavior problems (i.e., dementia), not only physical ones
Financial difficulties
Living with the person you’re caring for
Lacking friends or a support network
A high percentage of time or long duration spent as a caretaker
History of substance abuse

What are the signs of caregiver burnout?

Certain signs may indicate total exhaustion or caregiver burnout. If you are a caregiver or know someone who is a caregiver, look for the following signs.

Feeling overwhelmed
Feeling constantly worried
Not getting enough sleep, or sleeping too much
Gaining or losing weight
Feeling angry at the person you’re caring for
Feeling easily irritated
Avoiding friends and family
Feeling sad or hopeless
Having frequent body pains, such as headaches
Increasing the use of alcohol, drugs, or prescription medications
Getting sick more often

Caregivers experiencing any of these symptoms should speak to their doctor.

Measuring caregiver stress and burnout

The Zarit Burden Interview is the most widely used diagnostic tool for identifying caregiver burden.

To determine whether you are experiencing excessive caregiver stress, consider taking this Caregiver Health Self Assessment Questionnaire that was developed by the American Medical Association.

How to avoid caregiver burnout

You now have an understanding of what caregiver burnout is, how to recognize it, and who is most likely to get it. Here are 12 proven methods of avoiding burnout.

1. Make sure you get breaks for yourself

There’s no “pause button” for caretaking. Every caregiver may have felt the urge to simply walk away, but they understand that doing so could be catastrophic for the person who is relying on them. You don’t want to let it get to that point.

That’s why implementing breaks into your daily routine is so important. Short breaks can have a hugely positive impact on your mental outlook.

In some cases, the person you are taking care of can manage on their own for a few hours, so you can get away. Others may at least be able to entertain themselves safely while you are in another room.

If you are helping someone who needs constant supervision, you’ll have to be proactive about scheduling breaks. This could mean drafting a neighbor, friend, or family member to help periodically. Or it could mean hiring a home healthcare worker to stop in a few days per week.

We’ve already learned that a high percentage of time spent as a caregiver is a risk factor for burnout. Do everything you can to ensure you have time to yourself to relax and recharge. It’s the best thing for you and for the person you’re caring for.

2. Use tools that make sharing updates simpler

A primary caregiver isn’t only a healthcare worker, they’re a reporter, too. Close family and friends will expect updates on topics like symptoms, prognosis, how their medication is working, what the person is eating, and more.

Individual calls or emails are nice, but time-consuming. When a caregiver isn’t able to provide updates as often as they’d like, they can feel guilty about it which adds to their burden.

Tools like CaringBridge, PostHope, or MyLifeLine make communication easier. These sites let you post updates simultaneously—with controls to protect your loved one’s privacy.

A single update shared with everyone also reduces the risk of miscommunication. Everyone will have the same information, so they don’t feel left out.

3. Use online resources

Every caregiver should have a device with internet access. Critical advice and important resources can often be just a few clicks away.

One of many examples is Eldercare Locator. This free resource site, produced by the U.S. Department of Health and Human Services, has a clean, readable design and trustworthy links. In just a few clicks, you can connect with insurance, transportation, and home care resources.

Many other online resources for caregivers are worth consulting, such as online support groups and local home health organizations.

4. Join a support group

Participating in a support group is one of the best ways that a caregiver can use their limited free time. Caregiving can be isolating and frustrating. On the most basic level, a support group reminds caregivers that there are others facing the same challenges.

But on a deeper level, a support group can help provide guidance that’s based on experience. And a caregiver can feel the satisfaction and catharsis of helping others by sharing their successes and failures with other like-minded individuals.

Bonding over these shared experiences often leads to friendship. As supportive as family and friends can be, they can only sympathize with what you’re going through. A fellow caregiver can share the burden and support you, like a coworker or teammate.

5. Take a self-assessment test regularly

Caregiver burnout doesn’t happen all at once. Emotional, physical, and mental exhaustion accumulates over time.

You stand a better chance of avoiding burnout if you track benchmarks in your mental health. Taking a self-assessment test regularly (say, once a month) will give you a clearer view of how well you are coping.

Self-assessments ask basic questions about your feelings and your physical health. They shouldn’t take more than 10 to 15 minutes. We recommend the Caregiver Health Self Assessment Questionnaire, which was developed by the American Medical Association.

This small-time investment could save you the consequences of burnout.

6. Maintain positive relationships with other friends and family

When a loved one is going through a health crisis, everyone wants to help. Sometimes the best help is the simplest: Reaching out to a friend or family member.

Caregivers need a sense of normalcy that can often be obtained by going on a walk with a former coworker, having brunch with old friends, or enjoying a night at the bowling alley.

Friends and family may feel that they have to do extra, or they may feel hesitant about trying to contact you. Try to maintain a schedule with friends and family members, either by having a phone call every few months or arranging lunch meetups once a week.

7. Set boundaries

One of the biggest changes when you become a caregiver is making decisions for someone else. And the people who also love that person may not always agree with the decisions you make.

You can’t make everyone happy, and being second guessed adds to your burden. Family and friends who want to provide help may do so in a way that interrupts your routine.

So set clear boundaries about things like who should attend doctor visits, when people should visit, and the types of assistance you actually need.

8. Set health goals for yourself, including mental health

The emotional burden of caregiving can cause you to neglect your physical and mental health.

Positive behaviors like exercise and meditation become important when you are under emotional strain. They are an effective way to calm your racing thoughts.

Give yourself achievable goals for activities like these. Phone apps can help by providing daily reminders and preset programs that last 10 to 30 minutes.

9. Set realistic goals for your caregiving and ask for help when you need it

Too many caregiving situations start in crisis mode and stay there. That’s a sure path to caregiver burnout.

Early on, work with your doctor to identify a realistic level of caretaking. Think about your loved one’s current and future needs and whether you will be able to provide them.

For example, someone with a progressive, debilitating disease may be able to function normally now, but what happens when they need help getting in and out of the bathtub?

What types of care are you comfortable giving? Could you give shots, or monitor IV drips? What about driving to pick up medications or necessities like groceries with them in the car?

Think about what will go into caretaking in your unique situation, and set realistic goals for what you can do.

Overextending yourself can lead to burnout (or a dangerous situation) for the person you’re caring for.

10. Talk to a professional, including a therapist or social worker

Becoming a caregiver is a time of stress and even shock. These are times when talk therapy can be extremely comforting and critical to our ability to cope.

Family and friends can be a sounding board, but they also have a close relationship with the person you’re caring for. That makes it hard to honestly discuss feelings of shame, guilt, or anger—feelings that are common and valid.

Speaking to a third party gives you the freedom to express yourself, put certain feelings out into the open, and work on strategies for coping with them.

11. Be realistic about your loved one’s disease

Another reason to seek advice from a third party is to be able to honestly discuss your loved one’s path to recovery—or their lack of one.

For dementia patients, sadly, there is no cure. And doctors can’t say for sure how fast the disease will take hold.

Acceptance can be the hardest part of dealing with certain diseases. We want to believe our loved ones will beat the odds. Thinking realistically about what the future holds can help us balance our hopes with the practical requirements of home care.

12. Develop coping strategies that work for you

Every caregiving situation is different and so is every caregiver.

Some people may decide to take time for solitary walks before deciding that what they really want is to join a support group.

Coping on a daily basis can be a real challenge. Try to identify the stressful parts of your day and how you could alleviate that stress. Maybe you’d benefit from getting housekeeping help or a meal delivery service. It doesn’t have to be forever, but keeping your head above water for the health of you and the person you’re caring for has to be the top priority.

Self-care is part of caregiving

Caregiving can be a shock to the system. Our instinct is to help our loved one, no matter the cost to ourselves. But as the days, weeks, and months go by, we run out of energy.

The most important thing for caregivers to remember is this: Successful caregiving includes caring for yourself.

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Your generous Donations allow IAES to continue our important work and save lives!

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

Can viral infections trigger autoimmune encephalitis?

by Alanna | Oct 24, 2023 | PennNeuroKnow

October 15, 2023 | by Catrina Hacker, PennNeuroKnow and IAES Collaboration

A message from IAES Blog Staff:

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

—-

Introduction

The causes and risk factors for autoimmune encephalitis (AE) are as varied as its many symptoms and subtypes. Determining the cause of a case of AE is challenging because there are often several factors to consider. In most cases, doctors do not know the cause of AE, but in an increasing number of cases they do. Continued research toward understanding the causes of AE is important, because they can help doctors determine which patients are at risk and help researchers in their quest to develop better treatments. This post will discuss a few known causes and risk factors for AE with a special focus on the link between viral infections and AE.

What are the known causes and risk factors for AE?

When considering what may lead to a case of AE, it’s important to distinguish between causes and risk factors. Doctors consider something a cause of AE when they know that a particular change or process is responsible for triggering AE. Other factors that may put someone at higher risk of developing AE but don’t actually cause AE are considered risk factors¹. For example, infection with SARS-COV-2 is the cause of COVID-19 while spending time indoors with someone who has COVID is a risk factor. You’re much more likely to develop COVID-19 if you expose yourself to people who are infectious, but the ultimate cause of your illness would be infection with SARS-COV-2.

When it comes to AE, one of the clearest known causes is a tumor, which applies to a subset of AE called paraneoplastic AE². Patients with paraneoplastic AE have tumors in various parts of their body that abnormally produce components of brain cells. When the body’s immune system produces cells to attack the tumor, it sometimes creates cells that target these components. If those immune cells get to the brain, they can attack the brain’s own cells too^2,3.

Most of what we know about what leads to AE involves risk factors. For example, genetic risk factors have been shown to have a clear link to some types of limbic encephalitis. Specifically, a certain genetic mutation is found in 90% of patients with anti-LGI1 encephalitis, the most common form of limbic encephalitis that is not caused by a tumor^4,5. Genetic testing is not common for patients with AE because the results will not change how doctors treat the AE, and because many people will have this mutation but not develop AE. However, pinpointing genetic mutations can be important for researchers because it gives them a clear target for their research if they want to understand why some people develop AE while others do not. By understanding what effects the mutation has on regular bodily functions, they can understand why the mutation makes the patient more likely to have AE. They can then use this information to create treatments that counteract the effects of the mutation.

It is even trickier to understand the various environmental factors that can put someone at higher risk of developing AE. Like all risk factors, not everyone who is exposed will develop AE. Environmental risk factors are especially difficult to pinpoint for several reasons, including because the many possible risk factors make it difficult to narrow down the possibilities, doctors often rely on patients being able to report what they have been exposed to which isn’t always possible, and sometimes multiple environmental factors have to combine to have an effect. However, by sharing suspected risk factors and communicating with other doctors and scientists, sometimes doctors can identify new risk factors that help them make future diagnoses. One case in which this has been especially successful is in establishing a link between viral infection and AE.

What is the relationship between herpes simplex virus infection and AE?

One of the best understood links between viral infection and AE is the relationship between herpes simplex virus and anti-NMDAR AE^6,7. When herpes simplex virus infects the brain it causes a condition called herpes simplex encephalitis (HSE), in which the brain swells, just as it does in AE. Because they both cause brain swelling, AE and HSE have many similar symptoms, including seizures, headaches, and behavioral changes^8,9. Many people carry the virus that typically causes HSE (over 60% of people under the age of 50), but it very rarely leads to HSE¹⁰. When not properly treated, HSE has a high mortality rate, but with early detection it can be effectively treated with antivirals⁸.

For a while, doctors noticed that some patients with HSE had recurring or relapsing symptoms following treatment with antivirals. When they investigated further, they found that some of these patients had anti-NMDAR antibodies, indicating that their recurring symptoms were a result of anti-NMDAR AE^6,7. In several cases they were also able to show that patients did not have anti-NMDAR antibodies until well after developing HSE, suggesting that HSE is what triggered the production of anti-NMDAR antibodies^6,11. Now, doctors know that patients experiencing relapsing symptoms after HSE should be screened for anti-NMDAR AE so they can be treated with AE treatments instead of antivirals⁷.

But, as to be expected in the case of AE, the story gets a bit more complicated. Patients that previously had HSE who have relapsing symptoms don’t just have anti-NMDAR antibodies. They also have antibodies against several other components of healthy neurons⁷. It’s still not clear if only the anti-NMDAR antibodies are responsible for the relapsing symptoms, or if these cases are different from other cases of anti-NMDAR AE because patients have a diverse set of antibodies. For example, cases where patients with HSE were later diagnosed with anti-NMDAR AE show more widespread damage to their neurons than patients with cases of anti-NMDAR AE that were not attributed to HSE⁶. Some doctors think that HSE may be a more widespread trigger of autoimmunity against neurons beyond just the targets of anti-NMDAR antibodies⁷. Luckily, in a few documented cases, the treatments traditionally used for anti-NMDAR AE appear to work in treating HSE-induced anti-NMDAR AE as well^7,11.

Is there a relationship between other viral infections and AE?

There are several other possible connections between viral infection and AE, although none are as clearly observed or widely accepted as the link between herpes simplex virus and anti-NDMAR AE. In some very rare cases, AE cases follow COVID-19 infection¹². Other viruses that have been detected in patients with AE are varicella, Epstein-Barr, human herpes virus type 6, adenovirus, HIV, and hepatitis C⁷.

It’s important to note that in all these cases it is still unclear if a viral infection caused AE. All we can say is that these viruses were present in patients with AE. The reason we can be more certain of the connection between HSE and AE is because several studies have reported HSE that precedes detection of anti-NMDAR antibodies¹¹. More studies on the viruses listed above could eventually prove a similarly strong link between any of these viruses and AE if one exists.

AE isn’t the only autoimmune brain disorder that can be triggered by viruses. Perhaps the best example is Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS. Patients with PANS are children who develop autoimmunity after infection with a virus. Strep throat, caused by infection with the streptococcus virus, is one common cause of PANS¹³. While the symptoms of PANS and AE are similar, there are some important differences that distinguish the two conditions. Another example is the possible link between infection with the Epstein-Barr virus and the development of multiple sclerosis, another autoimmune disorder of the nervous system¹⁴. Though still controversial, some research even suggests that Alzheimer’s Disease may be triggered by a viral infection¹⁵.

Concluding Thoughts

AE is very rarely the result of a viral infection, and only certain kinds of viral infections have been linked to AE. That being said, understanding the cases where viral infection puts someone at risk for AE, as with herpes simplex encephalitis, is important, because it can help doctors make a faster diagnosis of this otherwise difficult to diagnose disease. As scientists continue to find compelling links between viral infection and brain disorders, research that improves our understanding of how this process works has the potential to improve our understanding and treatment of these challenging brain disorders.

References

Shader, R. I. Risk Factors Versus Causes. J. Clin. Psychopharmacol. 39, 293–294 (2019).
Graus, F. & Dalmau, J. Paraneoplastic neurological syndromes in the era of immune-checkpoint inhibitors. Nat. Rev. Clin. Oncol. 16, 535–548 (2019).
Rees, J. H. Paraneoplastic syndromes: when to suspect, how to confirm, and how to manage. J. Neurol. Neurosurg. Psychiatry 75, ii43–ii50 (2004).
LGI1-antibody encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/lgi1-antibody-encephalitis/.
Vogrig, A., Muñiz-Castrillo, S., Desestret, V., Joubert, B. & Honnorat, J. Pathophysiology of paraneoplastic and autoimmune encephalitis: genes, infections, and checkpoint inhibitors. Ther. Adv. Neurol. Disord. 13, 175628642093279 (2020).
Venkatesan, A. & Benavides, D. R. Autoimmune Encephalitis and Its Relation to Infection. Curr. Neurol. Neurosci. Rep. 15, 3 (2015).
Prüss, H. Postviral autoimmune encephalitis: manifestations in children and adults. Curr. Opin. Neurol.30, 327–333 (2017).
Gnann, J. W. & Whitley, R. J. Herpes Simplex Encephalitis: an Update. Curr. Infect. Dis. Rep. 19, 13 (2017).
Autoimmune Encephalitis Symptoms | AE Alliance. Autoimmune Encephalitis Alliancehttps://aealliance.org/patient-support/symptoms/.
Marcocci, M. E. et al. Herpes Simplex Virus-1 in the Brain: The Dark Side of a Sneaky Infection. Trends Microbiol. 28, 808–820 (2020).
Leypoldt, F. & Titulaer, M. J. Herpes Simplex Virus-1 Encephalitis Can Trigger Anti-NMDA Receptor Encephalitis: Case Report. Neurology 81, 1637–1639 (2013).
Stoian, A. et al. Autoimmune Encephalitis in COVID-19 Infection: Our Experience and Systematic Review of the Literature. Biomedicines 10, 774 (2022).
Gagliano, A., Carta, A., Tanca, M. G. & Sotgiu, S. Pediatric Acute-Onset Neuropsychiatric Syndrome: Current Perspectives. Neuropsychiatr. Dis. Treat. Volume 19, 1221–1250 (2023).
Bar-Or, A. et al. Epstein–Barr Virus in Multiple Sclerosis: Theory and Emerging Immunotherapies. Trends Mol. Med. 26, 296–310 (2020).
Wainberg, M. et al. The viral hypothesis: how herpesviruses may contribute to Alzheimer’s disease. Mol. Psychiatry 26, 5476–5480 (2021).

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Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

image - Can viral infections trigger autoimmune encephalitis?

Creating Your Personal Health Record (PHR) Notebook

by Alanna | Oct 10, 2023 | Special Series

October 11, 2023 |by Mari Wagner Davis, RN, ACM, and Tabitha Andrews Orth

Introduction from the IAES Blog Team:

A diagnosis of Autoimmune Encephalitis is overwhelming on a good day for everyone involved including the patient, loved ones, caregivers, friends, and medical staff. It is rare, difficult to understand and diagnose and may include multiple specialists on a team of medical providers to treat and help a patient. This holds true for many if not all types of disease or health care problems and keeping up-to-date and thorough medical records and having them handy in an organized form is crucial for optimum outcomes. To help make this process less overwhelming Mari Wagner Davis along with Tabitha Orth have put together a wonderful paper of what is needed. We hope you find this as helpful as we have!

——

Introduction

Think of a care notebook as a 1-stop shop containing everything that family, doctors, therapists, and care team would need to know about your care. A notebook is simple and easy to carry. Physicians and health care providers keep medical records to better understand a patient’s prior care and to help inform their decision for treatment plans. Developing your own system for organizing medical information, or creating a personal health record (PHR), will help you stay on top of doctor’s visits, medications, and insurance claims. Providing your own medical records may help you receive safer and quicker treatment if you change doctors, move, or end up in an emergency room.

Your PHR Notebook should contain:

The first page of your personal health record should include your name, date of birth, blood type. Record names, medical practices, addresses, telephone numbers, and email (if applicable) of your doctors and pharmacist. Include the emergency contact information of a caregiver, family member, or friend in case of an emergency. Include the name, policy number, address, and telephone number of your health insurance company and a table of contents.

List providers, including the office medical staff assigned to the doctor as your contact person. This may be a nurse or medical assistant who triages calls and patient portal communications. They may be able to assist you directly or pass the information to the doctor to address directly. Some doctor prefer patients use the patient portal to expedite communication. Include provider’s address, telephone number(s) and extensions if available, and fax numbers.
Pharmacy address, phone and fax.
Emergency Treatment protocol from your Neurologist and stated diagnosis.
Medications and supplements: Document the drug name, dosage, frequency, start date, end date, and the condition it is treating, plus any side effects experienced.
Medications you are allergic to and other allergies.
Immunization records.
Hospital discharge summaries.
If you’re a caregiver and requesting records for someone other than yourself, facilities will only release them if a direct authorization to disclose records to a third-party form is signed by the patient. Most requests can be fulfilled within 5-10 business days; however, HIPAA (Health Insurance Portability and Accountability Act of 1996) allows providers 30 days to complete a record request, plus a single 30-day extension.
Let your doctor know you’re creating a personal health record. Your doctor, of designated staff, may be able to help you find your medical records online, at hospitals, or other health care facilities. Doctor visit summariesand notes should include a disc copy of your chart which you will ask for annually. Make sure you keep the disc updated either from onset to present or from the date of the end of the previous disc. Ask that all studies e.g. EEG, MRI, any scans, be included. The after-visit summary you receive is not as detailed as the doctor’s notes. The doctor’s actual notes are far more detailed than a visit summary and can make a difference to a new doctor attending your case. Update your chart disc annually.
If several facilities are involved, contact medical records at the facility where an imaging test was performed and request the MRI, EEG or scans to be burned on a disc for your personal records. Sometimes there is a small fee for the cost of a disc. Some discs can be duplicated while you wait. Some discs may require mailing. The importance of having a copy of your most recent scans available is that it allows you to provide them to a new doctor. For example, an ER attending at a facility other than the facility where the scan was done, or a new doctor for a second opinion. Your copy allows a new doctor access to the most recent results which expedites your care. If you have an appointment with a new doctor and copies of your records were ordered to be transferred to their office prior to your appointment but never arrived, your copy avoids delays and the financial burden of having a scan redone. If you or your loved ones have certain lab tests done regularly, this record will enable you to track changes from year to year and ask informed questions. Taking your notebook with you to all doctor visits advances your care. This section should include notations of the last appointment and scheduled follow-up appointment. Get in the habit of requesting a copy of the doctor’s notes when making a follow-up appointment. Again, these are vastly different and more detailed than a typical visit summary. They are usually sent in the mail. Doctor’s notes are included in the disc copy you will be requesting annually. Your health notebook can speak for you when you are unable to remember clearly. Because supplement medical records from other facilities or providers on your team may take weeks to transfer, keeping copies of records as they accrue will help expedite your care.
A family health history (particularly parents, siblings and grandparents)
A personal health history (conditions, how they’re being treated, and how well they’re controlled, as well as important past information such as surgeries, accidents, and hospitalizations). If you can recreate a timeline of your whole medical history this will be helpful. Some keep this electronically as an email file that can be easily accessed.
Pharmacy printoutsthat accompanied prescribed medications. In a study, 40 percent of patients were unable to name a single medication.
Insurance formsrelated to medical treatment.
Legal documentssuch as a living will and medical power of attorney. POA and emergency contacts with a written release of information for the people who may assume your care.
Create separate sections for labs, specialty, and a daily journal that will read as a timeline
For students School strategies, IEPs, 504 plans, and contacts.
The journal should have the date, symptoms, medication changes, daily vitals if you keep these, accidents, and other pertinent information to the patient.
Copies of articles of interest.

Download PDF

Click here or the image below to subscribe to our mailing list :

Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

The Long Road to Somewhere …. Wherever That is

by Alanna | Sep 26, 2023 | AE Warrior Personal Stories

September 27, 2023 | By Amanda Wells

Introduction from the IAES Blog Team:

The staff at IAES is proud to present to you the heart wrenching AE story of Hannah Wells written by her biggest fan and advocate, her mom! This journey travels a very long and bumpy road but also is one of resilience, never ever giving up and, mostly, this is a story of love!

——-

Have you ever noticed how many people, when they are encouraging you, will say, ‘Oh, don’t worry you’ll get there’ but what if you no longer remember where ‘there’ is?

When my youngest daughter Hannah was born, she was 6 weeks premature. On Christmas day of 1983, the paediatrician called and said, ‘If she doesn’t fight, we will lose her, it’s now up to her’! New Year’s Day 1984 he called again, ‘Come and pick her up, take her home, she is a real little fighter, she did it!’ That day when she came home in our arms, we had no idea how that little fighter would have to dig very deep, again, and fight for her life 35 years later!

Hannah was our social butterfly, she was popular with everyone, and everyone seemed to know her! Once she started to talk, she never stopped. Her Grade 1 teacher said to her, ‘Hannah if you can stop talking in class for a whole day, I will give you $20.’ Hannah couldn’t stop talking so the $20 was left wanting!

At age 35 she had been working as a Practice Manager in a Dental Surgery for 10 years. She was amazing at her job. Dentists and patients alike loved her. She was chatty, never took a sick day, and was always organized. Hannah would call me every day from work just to fill me in on what was happening and to touch base.

Around the end of April/ May 2018, Hannah got the flu. She was suffering from headaches and became deaf in her right ear. She went to a general practitioner, and he said, on the third visit, to see a psychologist, he did not believe her headaches were real!

Then one day, in early June, my husband (who was still alive) and I had just been to IKEA and were on our way home when my mobile phone rang. It was Hannah. She had called me the night before to say goodnight and was fine, but this call was anything BUT fine. She was paranoid, delusional, and hearing voices. She had made up some unbelievable story of what was happening next door. I got off the phone and remember feeling ice in my veins, my husband, Hannah’s dad, and I looked at each other and said, ‘What alien has stolen our daughter?’

The days that followed that fateful June day were horrendous. Hannah was in full-blown psychosis. She would call me up to 30 times all night long, as she had insomnia. Her thoughts were disorganized, she could no longer work, and she couldn’t remember how to turn a computer on, copy and paste or even how to unlock a door. She couldn’t change her clothes because she couldn’t remember what clothes went where. She had no idea what day it was or even who our Prime Minister was. She would take off in the car and we didn’t know where she was. She didn’t even know where she was. The internal trauma and also one of her symptoms were now causing unimaginable rage.

When this all began Hannah developed dyskinesia or involuntary and jerking movements. She lost an extreme amount of weight and was now 35 kgs (between 75-80 pounds). Her anxiety was through the roof, and she had become aggressive. Her hair was falling out in spots, and she had tremors in her hands. Hannah knew something wasn’t right but by now had no idea how to articulate it. She was living in a mental prison that was terrorizing her. She knew, in all this chaos, something was wrong in her brain but had almost stopped talking. When she did talk, she would repeat the same sentence for hours, therefore she was unable to articulate how she was feeling.

She/we needed help, this was not our daughter, and I was desperate.

I took her to a nearby hospital emergency department hoping they could help her, but sadly this is where the nightmare really began. Not one test was done except a blood test for drugs. The on-call psychiatrist took me aside to ask what happened. I told her, ‘Hannah has never taken drugs, doesn’t drink, has no past or present trauma, and no mental health in the family. I said this happened, literally, overnight’. I will never forget her reply, ‘That means absolutely nothing.’

Hannah was sectioned under the Mental Health Act and put into the psych ward. The only test done was daily drug testing, no neurological testing was ever done or even suggested. The psych wards in our state are still lock-up wards. She was started on Risperidone, but Hannah refused to take it and would spit it out, as she told us much later, it was making her feel worse.

After getting her released from that psych unit, we decided to take her to one of our large teaching hospitals. They took her from me, and I had no further contact with her. I wasn’t asked what led to our decision to bring her there. They placed Hannah in a room with no water, bathroom, or blanket and took her phone away from her for 12 hours, no one checked on her. They then sectioned her under the Mental Health Act again.

I was trying to speak to a doctor and when I finally did, he told me she had been on drugs, ICE, and that’s why the dyskinesia in her face and weight loss. I asked if he had her chart in front of him and the blood test to confirm this. He admitted he didn’t! Again, no tests were done on Hannah, we couldn’t get information about her from the staff, and by now we were desperately trying to get her out of that hospital and under a private doctor’s care.

To this day I have no idea how my husband got her out of there and got her an urgent appointment with a private psychiatrist, but somehow, he did! She was immediately admitted to a private psych hospital. They did an ECG (on her heart!!!) tested her blood for drugs and that was it. They put Hannah into 2 weeks of CBT, cognitive behavioral training for someone, who cognitively, was a mess! Her short-term memory was non-existent. She was unable to read, write or comprehend 2/ 3 sentences. They also prescribed new antipsychotics! Hannah’s memory and executive functioning abilities were in total chaos, but not one person suggested a neurological workup! As her Mum, I had never felt so hopeless in my life. My daughter was there on the outside, but on the inside, it was like she had left us permanently.

By the end of September and Hannah’s initial psychosis was at last dissipating. There were still the outbursts of rage, strange seizures where she would seem to be frozen, dyskinesia, and limited speech that was often slurred. She would still repeat a phrase or thought for hours, we called it her hamster wheel.

2018 turned into 2019. Trying to get through 2019 was difficult, to say the least. Not only had the disease traumatized her but the auditory hallucinations and repeated hospitalizations had bullied her. She was still very sick, and the doctors had no answers at all!

In 2020 I decided to take her to my dermatologist to check the alopecia (hair loss) that had begun back in 2018 when this all first began. She did a blood test and told Hannah she needed an endocrinologist immediately. She felt she had a thyroid problem. Her blood samples showed abnormal levels. The endocrinologist who treated my husband for osteoporosis, treated Hannah for Graves’ disease, but soon realized this was not her thyroid, there was something else going on and as she said, ‘it was above her pay grade.’ She sent Hannah to her brother who is an infectious and rare disease doctor.

During this time, I went with Hannah back to her psychiatrist who still insisted on seeing her monthly. I was stunned when we told him about the blood tests and the endocrinologists’ findings. He said, ‘I believe this is just a false positive and she just has anxiety and stress.’

By November 2020 we now had seen the rare diseases doctor who flagged her for Autoimmune Encephalitis, but he was stumped and believed she needed a neurologist. We found a neurologist who knew about AE and waited 6 weeks for an appointment.

During all this, my husband, Hannah’s dad passed away a few days before Christmas 2020. I had been caring for him for the last year and for Hannah also. I was exhausted!

Hannah and I were now both grieving the loss of a great husband, an incredible dad, and for Hannah, and the life that she once had.

It was 2021 by the time we saw the neurologist. He ordered an MRI, lumbar puncture (LP), and EEG. He told us the MRI came back normal, as did the LP, but the EEG indicated slowing in the temporal lobes, He said he believed she had Autoimmune Encephalitis. He put her on high-dose steroids tapering down for 3 months. There was some improvement after 3 months, so he repeated the high-dose steroids. He then put her on Cellcept and steroids. He told her to come back if she needed him.

In April 2021 Hannah had a horrific reaction to Cellcept. The neurologist discontinued Cellcept, but she remained on steroids. He said he felt it was now probably too late to treat her! During this time, Hannah began to have breathing issues, but a CT scan did not reveal anything amiss. I was very concerned about Hannah’s bones with all the steroids and told her neurologist, as osteoporosis runs in the family.

April/ May 2022 Hannah seemed to be in a relapse. The only answer they had was more high-dose steroids. Hannah’s GP (general practitioner) was concerned and referred her to another neurologist for a 2^ndopinion. This new neurologist, also, said it was Autoimmune Encephalitis and put Hannah back on another round of high-dose steroids and wanted Hannah to have full cognitive testing.

This journey was beginning to feel like one big roundabout that had no exit. Trying to get any proper treatment was almost impossible.

Her cognitive testing showed deficits with her executive functioning, word processing, short-term memory, and visual abilities were all very badly affected. Hannah was told she needed brain rehab immediately. The report said that this was caused by Autoimmune Encephalitis and damage to the temporal lobe.

The neurologist then said I will see you in 6 months and since it had been 4 years since this all began it is too late to treat Hannah. Her MRI showed a small amount of inflammation, but again ‘It’s too late to treat her now.’

At this point in this long terrifying journey, I was ready to scream. Hannah was now traumatized by the very system that is supposed to heal and help you navigate through a rare disease.

Exactly one week and one day after the neurologist sent us on our way for 6 months to Rehab which was possibly never going to happen because of the long wait list, Hannah ended up in a Private hospital Emergency Dept on her birthday, she was extremely sick. They suggested we go back to her endocrinologist. I was so frustrated we were back at the beginning again! Hannah was devastated. She lost her career, her friends, her life! This disease is harrowing and traumatic, and you have to walk the road to somewhere …… alone!

I was able to obtain Hannah’s complete medical chart that included all prior testing and information. I was beyond incredulous at what I was looking at. Her breathing issues back in 2021 when they said the testing showed nothing amiss was a rib fracture. I was right, this looked like osteoporosis! All her blood tests showed inflammatory markers through the roof since her relapse in May 2022. Her GP couldn’t believe how sick she was. She was now having around 4/5 seizures a day. Her dyskinesia had returned, and anxiety and OCD through the roof. The GP prescribed Azathioprine and steroids, and seizure medication.

I asked for a bone density and her bones were a mess, at 39 she now had osteoporosis!

I thoroughly researched all possible doctors we could contact and turn to review Hannah’s case. I found 2 immunologists; one was a neuroimmunologist whose interest was in Autoimmune Encephalitis. Both had 12-month waits. I wrote to both doctors a letter pleading for help and succinctly outlining Hannah’s case history and her present-day symptoms. Her endocrinologist was stunned she was back where she started 4 ½ years ago, she even contacted the immunologists. Both immunologists denied her an appointment. Their reasoning? She was too complicated and was in the system for too long.

Then out of the blue Dr Martin Newman, the neuro immunologist with experience in AE had a change of heart and called wanting to see her in three days. Her medical file had almost 100 pages (and this was missing most of the beginning files!) and after 5 minutes he said to her, ‘So have they treated you with IVIG or Rituximab?’ Hannah said, ‘No.’ His response was ‘Why not’! Hannah cried, as she sat before someone who just maybe would now help her come back from the brink of the darkness of shame, guilt, isolation, and feeling lost, and she asked him, ‘Will you be able to help me?’ His answer was, “I certainly will Hannah.’ He started Hannah on IVIG in early May 2023 followed by two Ritux infusions. She will most likely be on both for the foreseeable future. Hannah is now, also, in weekly Brain Injury Rehab.

It is now 5 years since Hannah stood on the edge of insanity and a harrowing nightmare. Hannah had almost forgotten who she was and what it’s like to be ‘normal’ and healthy.

I am so thankful to Tabitha Orth, President and Founder of IAES and the IAES family. They were always there, whether I needed a rant or information, their resources seemed limitless. I had no choice but to learn everything I could about Autoimmune Encephalitis. I realized, for an advocate, knowledge is power! I am so thankful for IAES who gave me so much knowledge so as to keep advocating for my daughter.

After 4 months we have seen great improvement. She is mentally and physically up and down. Each day can be different, which we were told to expect, but her progress especially cognitively has amazed all those caring for her medically.

IVIG dealt with a lot of her physical problems. Rituximab kicked in around 9 weeks and she was amazed at some of the improvements cognitively. Where almost ‘there,’ even though ‘there’ is different from what I had expected, but ‘there’ is more than OK. One of the remaining issues with AE is loss of identity and confidence. Hannah’s motto through all this is: ‘I was enough before and I’m enough now!’

After 5 harrowing and terrifying years, we have learned a lot. If you are an advocate/caregiver or even a patient trying to advocate for yourself, don’t give up! There will be someone out there who has a small beacon of light, a life raft for you to jump in, and most of all hope to give you the strength to keep going. IAES and their personal care held a torch for me to see and guided me to the tugboat whose name was ‘DON’T QUIT!’

Just find that light and keep your eye on it!

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Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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Neuro MythBusters: The truth behind 10 common myths about your brain

by Alanna | Sep 12, 2023 | PennNeuroKnow

September 13, 2023 | by Catrina Hacker, PennNeuroKnow and IAES Collaboration

A message from IAES Blog Staff:

When it comes to evidence-based answers about all thing’s neurology and neuro myth busting, who you going to call? Well, here at IAES it will be the PNK team of course! We hope you enjoy and learn from this myth busting blog as much as we have!!

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

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Introduction

Many people find neuroscience fascinating because learning about our brains teaches us about ourselves. Unfortunately, popular interest in brain research has led to several pervasive myths that misrepresent how our brains work. Combatting these neuromyths is difficult because the truth is often much more complicated than the myth and buried in intimidating scientific literature. However, correcting misconceptions about how our brains work can have important benefits for our everyday lives. In this post I’ll break down what some of these neuromyths claim, where they came from, whether there’s any truth behind them, and why we should care about correcting them.

Myth #1: Humans only use 10% of our brains.

This is arguably the most common neuromyth¹, inspiring movies like Limitless (2011) and Lucy (2014) in which characters gain superhuman abilities by tapping into the large unused portions of their brains. It’s appealing to think that we all have potential superpowers sitting in our brains waiting to be unleashed, but there’s nothing to support this claim. The reality is that neuroscientists observe activity throughout the entire brain.

While nobody is certain where it came from, some believe that this myth originates from work done by neuroscientist Wilder Penfield in the 1930s¹. Penfield was a neurosurgeon who studied the effects of stimulating the brains of patients undergoing neurosurgery to learn what each part of the brain was responsible for. He found that stimulating a large portion of the brain didn’t cause any noticeable effect², meaning he could not learn what its function might be. However, new and less invasive methods of recording brain activity show that these “silent” parts of the brain are actually active. In fact, a network of brain regions called the default mode network is even active when we are at rest³.

The bottom line: We use 100% of our brains.

Why it matters: The number of drugs and treatments that claim to enhance brain function, collectively called neuroenhancers, is on the rise. While we can always learn and grow, understanding that there is no “hidden” brain waiting to be unlocked can protect you from wasting your money.

Myth #2: Right-brained people are creative while left-brained people are analytical.

The idea that you can be either right-brained or left-brained has captured the attention of people on social media and even teachers in classrooms. It’s tempting to think that people can be categorized so easily and that differences can be attributed to our brains, but the truth isn’t that simple. While people can tend to be more creative than analytical or vice versa, those differences cannot be explained by dominance of one half of the brain over the other⁴.

This myth has been tricky to combat because there is some important truth behind it. There are some differences between the two halves of your brain, but creativity versus logical reasoning isn’t one of them. Your brain has two hemispheres, left and right, that communicate via a bundle of neural connections called the corpus callosum. While almost everything we do involves communication between the two halves of our brain, sometimes one half of the brain contributes a little more than the other. For example, the left hemisphere typically takes the lead in language processing⁵, the right hemisphere seems to play an especially important role in visual attention⁶, and the left and right hemispheres might do slightly different things to aid in face processing⁷. Things like creativity and emotional processing rely on both hemispheres and complicated networks of brain activations^8,9.

The bottom line: Being right-brained or left-brained can’t explain why some people are more creative than others, but there are some differences in what your left and right hemispheres do when it comes to things like language, attention, and face recognition.

Why it matters: Categorizing people as one thing or another (left-brained or right-brained) is restrictive and ultimately harmful. Many “logical” tasks require creativity and “creative” tasks require logic. If teachers, mentors, and bosses make these assumptions about members of their teams or classrooms they risk mischaracterizing people or preventing them from working up to their true potential.

Myth #3: Listening to Mozart makes babies smarter.

This neuromyth, sometimes called the “Mozart effect”, started in 1991 when Alfred Tomatis shared his thoughts about how listening to Mozart could help children with speech and auditory disorders¹⁰. When a group of researchers showed in 1993 that listening to 10 minutes of Mozart’s K. 448 improved college students’ ability to visualize and manipulate mental images¹¹, the media took this result and ran with it. The effects in the original study only lasted 10 to 15 minutes and only impacted mental manipulation of images, but the media wrote about general boosts to intelligence and implied that they lasted much longer. Despite the original study being done with college students, the myth was somehow generalized to include babies. Several studies published since 1993 have provided alternate explanations for the original result or have failed to replicate it while studying the same or different skills¹².

Although listening to Mozart can’t make you smarter, there is some truth behind this myth. Stimulating an infant’s brain helps with their development, but activities like direct interactions with a parent, reading a book, or talking and singing with an infant are much more effective^13,14. When it comes to music, passively listening might not impact development, but learning to play an instrument positively impacts a child’s cognitive abilities and their performance in school¹⁵.

The bottom line: Listening to Mozart doesn’t make babies smarter, but stimulation from things like singing to your child is an important part of their development, and children who learn to play an instrument tend to perform better in school.

Why it matters: Belief in the Mozart effect and similar claims led many people to show their children the popular Baby Einstein videos in the early 2000s. However, in 2007 a study showed that not only did viewing these baby DVDs not improve children’s intelligence, children who watched the videos tended to have a worse vocabulary than other children¹⁶.

Myth #4: Everybody has a distinct style in which they learn best.

Many people have memories like mine of being asked if they are a visual, auditory, or kinesthetic learner as a child. You may even have filled out a survey to learn what your learning style is. Even today, many teachers collect this information and personalize their teaching to each student’s supposed learning style. While this seems logical, there is no evidence that each person has a specific learning style in which they learn best^17,18, and some research suggests that teaching to learning styles is more harmful than helpful¹⁹. While it’s true that people vary in ability on different kinds of tasks and that teachers should work with students as individuals to help them succeed, when “visual learners” are tasked with learning through auditory tasks, they do just as well¹⁹.

The bottom line: Everybody has different preferences, but matching teaching to a preferred learning style does not improve learning.

Why it matters: It is a waste of time and resources to focus on tailoring education to preferred learning styles when it has no impact on learning. In fact, teaching based on learning styles might actually harm students by limiting them to certain modalities and subjects that match their learning style and discouraging them from exploring²⁰.

Myth #5: Your handwriting reveals aspects of your personality.

The use of handwriting to learn about someone’s personality is called graphology. Graphology became popular in the late 1800s, with German scientist William Preyer commenting that handwriting is “brain writing”^21,22. Despite its dubious scientific validity, graphology was used to make decisions about a person’s value to society, such as in determining whether a person was trustworthy or a criminal. Fortunately, modern experiments have conclusively shown that handwriting cannot predict a person’s personality. In controlled settings, graphologists are no better at using a person’s handwriting to make judgments about them than if they were guessing²³. However, many people still believe that aspects of a person’s personality can be learned from their handwriting, and some computer scientists are still trying to build computer models that can predict things like criminality and work ethic from handwriting²⁴, repeating the mistakes of the past.

Despite the dubious link between handwriting and personality, there are some reliable links between handwriting and brain health. Our brains control the muscles that move as we write, and some neurological disorders can cause changes in the brain that impact handwriting²¹. For example, one early symptom of Parkinson’s Disease can be small, cramped handwriting²⁵. For this and related disorders, handwriting can act as a window into brain health and an early warning sign that can lead to faster care and better outcomes.

The bottom line: A person’s handwriting cannot reliably predict their personality, but changes to handwriting can be early signs of neurological disorders like Parkinson’s Disease.

Why it matters: Despite there being no connection between a person’s handwriting and their personality, in 2017 then President Donald Trump tweeted about being able to tell from his handwriting that former United States Secretary of the Treasury, Jack Lew, “is secretive”²². Some scientists are still trying to build tools that can determine a person’s personality based on their handwriting to help with hiring decisions²⁴. Without widespread acceptance that handwriting cannot predict personality, we risk repeating the mistakes of the past and using handwriting to unfairly discriminate against certain people.

Myth #6: A common sign of dyslexia is seeing letters backwards.

Dyslexia, characterized by difficulty reading, affects an estimated 20% of the population and is the most common neuro-cognitive disorder²⁶. It is a popular misconception that a common sign of dyslexia is seeing words and letters backwards. People with dyslexia don’t see words and letters backwards, but they do have difficulty naming letters and words (think saying “was” while reading “saw”)²⁷. When it comes to writing, there is some evidence that dyslexic children may be more likely than others to write letters and words backwards, a phenomenon called reversals. However, reversals are common in all children learning to read and write²⁸, and not all children with dyslexia make reversals²⁹.

There are many other reliable indicators that a person may have dyslexia. The signs of dyslexia change throughout a lifetime and range from preschool children who struggle to identify the letters in their names to high school students who struggle to read unfamiliar words³⁰. Visit this fact page from the Yale Center for Dyslexia & Creativity for a full list of signs of dyslexia for all age groups.

The bottom line: Dyslexic children don’t see letters backwards, although they may read and write letters backwards. However, not all dyslexic readers write letters backwards and not all children who write letters backwards are dyslexic.

Why it matters: If parents and educators expect dyslexic children to describe seeing letters backwards or adults think they must see letters backwards to have dyslexia, then many people could go undiagnosed and not get the support they need to succeed.

Myth #7: Human memory works like a camera, perfectly recording what you experience.

As a child, one of my favorite book series starred Cam Jansen, a fifth grader who solves mysteries utilizing her flawless photographic memory. Any time she wanted to remember something she would say “click” and it would be perfectly captured in her memory. As an adult, I’ve watched plenty of TV shows and movies featuring similar characters who can use their perfect memory to save the day. Unfortunately, this kind of memory doesn’t exist outside books and other media.

For the rest of us here on earth, our brains forget and fill in details of our memories, even when we feel certain we remember things perfectly. A great example of this is the visual Mandela effect, wherein people consistently report strong false memories of things like whether Curious George has a tail or the Monopoly man wears a monocle (neither is true, but people consistently believe that they are)³¹. In general, it’s a good thing that our brains work in this imperfect way. We don’t want to get bogged down with irrelevant details of memories, so our brains act as a filter, prioritizing memory for the things that matter most and filling in the details and moments that are less important.

If our memory is so imperfect, where does the idea of photographic memory come from? This myth might have started after psychologist Ralph Haber noticed that a small percentage of children seemed to be able to hold pictures in their mind’s eye for seconds or minutes after they were removed from sight³². He called this kind of memory eidetic memory (often used interchangeably with “photographic memory” in popular media). However, these studies only looked at memory for short periods of time, and later research demonstrated that this “memory” is far from perfect³³.

The bottom line: Some people can remember things better or longer than others, but nobody’s memory works like a camera.

Why it matters: Our criminal justice system still relies heavily on eyewitness reports. If police officers, lawyers, and jurors don’t realize that memory is flawed, they risk inflating the value of this kind of testimony and incarcerating innocent people³⁴.

Myth #8: People with bigger brains are smarter.

We’ve all heard or used the term “big-brained” to describe someone who does something smart, but the size of their brain has nothing to do with their intellect. If size was all that mattered, then elephants, whose brains are 3x heavier than ours, would be 3x smarter than us³⁵. Even if we’re just looking at human brains, Albert Einstein’s brain was no bigger than average, and despite years of studying his brain, neuroscientists haven’t found any clear differences in its structure compared to other human brains³⁶.

The myth that smarter people have bigger brains has a particularly harmful history. In the 1800s, scientists measured the skulls of people of different races and genders as an estimate of brain size to provide “scientific” evidence that Caucasian men were superior to women and other races. There are many reasons this approach was flawed, not least of which is that correcting for body size can account for many of the reported differences³⁷. In 1898, a woman named Alice Lee challenged this idea by storming into the all-male meeting of the Anatomical Society at Trinity College Dublin, measuring the skulls of several prominent men in the audience, and demonstrating that many of these supposedly intelligent men had rather small skulls³⁸.

Read my previous post, “The Problem of Brain Size”, for a more detailed look at this myth.

The bottom line: Brain size has nothing to do with intelligence.

Why it matters: Flawed measurements of brain size have historically been used as scientific “proof” that women and racial minorities are not as intelligent as Caucasian men. Dispelling this myth is critical to reverse the harm done by the claims made in these studies and to prevent making the same mistakes in the future.

Myth #9: Playing brain games makes you smarter.

We’ve all seen ads for games that claim to train your brain to make you smarter, or measure your IQ. However, these claims are misleading and overinflated. One study conclusively proved this by having over 11,000 people play online brain games for six weeks. At the end of the six weeks, people had gotten a little better at the specific games that they played, but they were no better at any other tests³⁹. In other words, playing one memory game could make people better at that game, but it didn’t improve their memory overall.

In 2016, the brain game company Lumosity paid a $2 million settlement to the Federal Trade Commission (FTC) who filed false advertising charges against them⁴⁰. The FTC asserted that Lumosity’s claims that playing their games could improve performance on everyday tasks, delay age-related cognitive decline, and reduce the effects of brain injuries like stroke were unfounded. Since the settlement, Lumosity has been forced to alter their claims so that they do not mislead consumers.

The bottom line: Playing brain games makes you better at those particular games, but not any smarter overall.

Why it matters: Before investing time and money into products that claim to improve brain function by playing fun brain training games, it’s important to understand that these effects are often small and improve performance on specific tasks, but don’t generalize.

Myth #10: Different regions of your tongue are specialized for different kinds of tastes.

There are five basic tastes: bitter, salty, sour, sweet, and umami⁴¹. The myth goes that there are different parts of your tongue that are specialized to sense different tastes, so sweet and salty tastes are sensed on the tip of your tongue, while bitter tastes are sensed toward the back. I remember learning this myth for the first time at a girl scout meeting where we tasted different foods by placing them on different parts of our tongue. Since then, I heard it repeated many times in school and even in some of my neuroscience classes as an undergrad. In fact, many textbooks that are still being used today include this false claim. However, the truth is that although some parts of the tongue might be more sensitive to one taste or another, all five basic tastes are sensed across the entire tongue⁴².

The tongue map myth started with a 1901 paper in which German scientist David Hänig measured how much taste sensitivities changed across the tongue. He noticed that some parts of the tongue were more sensitive to a particular taste than others, and he drew some graphs to show how those sensitivities changed across the tongue. In 1940, another scientist adapted these graphs for a book about the different senses. In his adaptation, he simplified things by showing a single taste that was most sensitive on each part of the tongue rather than the relative sensitivities of each taste. This gave the false impression that each region of the tongue could sense just one taste, and this oversimplified figure has been copied thousands of times into science textbooks to teach the neuroscience of taste.

The bottom line: Sensitivity to each taste varies somewhat across the tongue, but each part of the tongue senses all the basic tastes.

Why it matters: The negative consequences of this myth might not be as harmful as the others, but it’s always worth correcting our understanding of ourselves and our bodies.

Now that you’ve learned the truth behind 10 popular neuromyths, it’s worth asking how so many neuromyths have leaked into popular press and what we can do to prevent them in the future. Preventing the spread of disinformation about the brain starts at all levels. Scientists should be careful not to overgeneralize or oversimplify their findings and to always consider alternative explanations and how their work might be misinterpreted. Journalists and science communicators should carefully report the results of scientific studies and not overstate what a given experiment shows. Non-scientists should think critically about what they read, and fact check things they read from unknown sources on social media. And most importantly, now that you know the truth behind the myth, the best thing you can do is to teach it to others who still believe in these popular neuromyths.

References

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40. Lumosity to Pay $2 Million to Settle FTC Deceptive Advertising Charges for Its “Brain Training” Program. Federal Trade Commission https://www.ftc.gov/news-events/news/press-releases/2016/01/lumosity-pay-2-million-settle-ftc-deceptive-advertising-charges-its-brain-training-program (2016).

41. sarah. Accounting for taste. Curious https://www.science.org.au/curious/people-medicine/accounting-taste (2016).

42. Caballar, R. D. Do Different Parts of the Tongue Taste Different Things? https://www.brainfacts.org:443/thinking-sensing-and-behaving/taste/2018/do-different-parts-of-the-tongue-taste-different-things-010319.

Cover photo made by Catrina Hacker in Biorender.com using image by GraphicMama-team from Pixabay.

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Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

image - Neuro MythBusters: The truth behind 10 common myths about your brain

10 Big Unanswered Questions in Neuroscience Part 1

by Alanna | Aug 29, 2023 | PennNeuroKnow

August 30, 2023 | by Sophie Liebergall, PennNeuroKnow and IAES Collaboration

A message from IAES Blog Staff:

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

As AE Warriors, caregivers, friends, family, loved ones and medical personnel we have been unwittingly thrown into a world we may or may not have been at all curious about previously. No matter where we are in our individual AE journeys, neurology and neuroscience are terms we all know well. AE may have sent us on this journey deep into the amazing world of neurology, but we all have found out just how interesting and fascinating our brains can be! In the first of a two-part series, Sophie Liebergall has helped us to better understand 10 big unanswered questions in neuroscience! We hope you enjoy this and look forward to Part II.

——

Introduction

This past year, astrophysicists used NASA’s James Webb Space telescope to observe a star that is over 33 billion light years away from earth. Back on earth, particle physicists used the Large Hadron Collider in Switzerland to confirm the existence of incomprehensibly tiny subatomic particles. But despite these astounding scientific and technologic advances, we still have a lot to learn about what is going on in the organ inside our own skulls! In part one of what will be a two-part series, we discuss a few of the fundamental questions about the brain that have remained mysterious to neuroscientists.

1. Where do our memories go when we put them in long-term storage?

For a brain to perform complex tasks, such as telling the body to execute a series of movements or being able to recognize and evade a predator, it must be able to recall information that was gathered during previous experiences. Neuroscience researchers divide memory storage into two stages: short-term memory and long-term memory.¹ When the brain senses something in its environment, it can hold that information for a few seconds to minutes as a short-term memory.² Over time, scientists have gathered clues that short-term memories (at least those of conscious facts and events) are stored in the hippocampus, an almond-size region nestled on either side below the brain’s surface on either side.³ But sometimes the brain needs to hold onto information for longer periods of time (up to a lifetime) so that is can be recalled later. We’re fairly certain that long-term memories aren’t stored in the hippocampus; but where exactly these long-term memories go remains a mystery. Several recent studies seem to suggest that, unlike short-term memories, long-term memories may be widely distributed in the cerebral cortex (the large surface of the brain that is used for complex thought), with different features of the memory spread across different regions.^4,5 You can read more about the process of memory formation and how it can go wrong in some diseases here!

2. Why do we need to sleep?

Evolution has shaped the human body into an elegant and efficient machine, with a versatile digestive system, a continuously beating heart, and a thinking brain. However, one of our basic biologic functions, sleep, seems like something that should have been stamped out by evolution many generations ago. When we sleep, we are essentially unconscious for up to one-third of the day. For our ancestors, this is a time when they were particularly vulnerable to predators and unable to gather food. So why, then, has sleep survived the test of natural selection?

Sleep is absolutely necessary for all animals (from armadillos, who sleep up to twenty hours each day, to giraffes who need just two hours of sleep a day).⁶ After just a couple days of total sleep deprivation, many people will start to show symptoms of psychosis.⁷ And if the sleep deprivation continues, it can even be deadly. In a study from the 1980s, which would likely be forbidden under contemporary ethical standards, researchers subjected a group of rats to total sleep deprivation. All of the rats died by the 32^nd day of the study.⁸ The ultrarare genetic disease Fatal familial insomnia gives further insight into the danger of insomnia in humans. Patients with Fatal familial insomnia slowly lose their ability to fall and stay asleep.⁹ Tragically, these patients always die soon after they completely lose their ability to sleep.

Sleep is important for a variety of our body and brain’s normal functions: solidifying events that occurred during the day as long term memories,¹⁰ recalibrating the strength of the connections between brain cells,^11,12 balancing the hormones that control our appetites and metabolism,¹³ and clearing the toxic byproducts of brain cell activity.¹⁴ But scientists still do not know what function (or functions) of sleep are the primary reason why it is essential for survival. Read more about the possible hypothesis for why we sleep in this PNK article!

3. Why do we dream?

Even more mysterious than the question of why we sleep is the question of why we dream. Though sleep has been a target of neuroscience research for decades, there are inherent challenges to studying dreaming that prevent us from using some of the traditional tools of neuroscience research. The study of dreams still largely relies on dream reports, when a person wakes up and verbally reports or writes down whether they were dreaming and what their dream was about. Dream reports are often unreliable because of the bias and imperfect memory of the dreamer. This can prevent researchers from making objective scientific conclusions from dream reports. Furthermore, all animals clearly display some form of sleep, but there is no conclusive evidence that other animals have dreams. This makes it challenging or even impossible to study dreaming using laboratory animals, which generally allow us to perform important experiments that would take too long or be too dangerous in humans.

Though we have recently developed more sophisticated tools that allow us to correlate the dream reports of humans with measures of brain activity, many of these studies have only raised more questions. It was once thought that dreaming only occurred during rapid eye movement (REM) sleep, the phase of sleep during which brain waves look most similar to the waking state. But more recent evidence suggests that dreams occur during both REM and non-REM sleep (though dreams that occur during REM sleep do seem to be more vivid than the dreams that occur during non-REM sleep).^15,16

Another strange aspect of dreaming is called the dream-lag effect, which describes a phenomenon in which you’re most likely to dream about real life events that happened 5-7 days ago.¹⁷ And we still don’t have a clue as to why some people are prone to sleepwalking: a state in which individuals are clearly deep in a dream, but somehow are aware of their surroundings enough to navigate a space, consume food, or even drive a motor vehicle.¹⁸ You can learn more about the neuroscience of dreaming here!

4. How do the general anesthesia drugs used during surgery make you unconscious?

General anesthetics, the class of drugs which cause temporary unconsciousness, have made it possible for doctors to perform lifesaving and life-altering surgeries that would otherwise be impossibly painful for patients. General anesthetics are some of the most safe and reliable medications that are administered by doctors. But we still don’t have an understanding of where general anesthetics act in the brain, or of what their ultimate effects are on brain processes. Even though anesthetic drugs all have the same end effect of making a patient unconscious, anesthetics can come in all different shapes and sizes. Some, like xenon gas, have a structure as simple a single atom, whereas others, like alfaxalone, have a complex structure with many branches and rings.^19,20 Some are inhaled as a gas, whereas others are injected into the bloodstream. And, strangely, general anesthetics don’t just sedate animals with complex brains like humans. They also impair the movement and environmental responsiveness of plants and even single-celled organisms!²¹ You can learn more about the possible mechanisms of general anesthetics and their relationship with sleep in this PNK article.

5. How does each area of the brain know what function it is supposed to perform?

In the mid-19^th century, in the early days of modern neuroscience, the French physician Paul Broca learned of a patient with a unique neurologic condition. This patient had lost the ability to generate speech, but had somehow maintained the ability to comprehend speech.²² When this patient died, Broca performed an autopsy, where he discovered that the patient had sustained an injury to a very specific area of their frontal lobe. Broca’s work inspired other physicians of his age to look for injuries to specific areas of their brains in their patients with specific neurologic symptoms. If multiple patients with the same symptoms had an injury in the same region, then it could be assumed that an injury to that region was the cause of the symptom. These studies of localized brain injuries led neurologists to believe that different regions of the brain are responsible for the different functions of the brain. For example, one region of the brain is required for the ability to move a hand, whereas another region of the brain is required to read language.

Modern-day neuroscientists and neurologists take the idea that certain regions of the brain are responsible for certain functions for granted. But there is a great deal of complexity to this picture that we have yet to understand. The exact mapping of the functions of the brain can vary between individuals – sometimes in dramatic ways. For example, most people have the speech control area of their brain somewhere on the left side of their brain. But occasionally, in people who are left-handed, the speech control area is instead found on the right side.²³ This variability between individuals suggests that the process of assigning a function to a specific brain region doesn’t follow a simple blueprint. But we still don’t know how the brain knows which functions it needs to perform. And we also don’t know each function is assigned to a particular region of the brain.

Stay tuned for part two with five more big unanswered questions in neuroscience coming this summer!

References

1. Cowan, N. What are the differences between long-term, short-term, and working memory? Prog Brain Res 169, 323–338 (2008).

2. Atkinson, R. C. & Shiffrin, R. M. Human Memory: A Proposed System and its Control Processes11This research was supported by the National Aeronautics and Space Administration, Grant No. NGR-05-020-036. The authors are indebted to W. K. Estes and G. H. Bower who provided many valuable suggestions and comments at various stages of the work. Special credit is due J. W. Brelsford who was instrumental in carrying out the research discussed in Section IV and whose overall contributions are too numerous to report in detail. We should also like to thank those co-workers who carried out a number of the experiments discussed in the latter half of the paper; rather than list them here, each will be acknowledged at the appropriate place. in Psychology of Learning and Motivation (eds. Spence, K. W. & Spence, J. T.) vol. 2 89–195 (Academic Press, 1968).

3. Duff, M. C., Covington, N. V., Hilverman, C. & Cohen, N. J. Semantic Memory and the Hippocampus: Revisiting, Reaffirming, and Extending the Reach of Their Critical Relationship. Frontiers in Human Neuroscience 13, (2020).

4. Yadav, N. et al. Prefrontal feature representations drive memory recall. Nature 608, 153–160 (2022).

5. Roy, D. S. et al. Brain-wide mapping reveals that engrams for a single memory are distributed across multiple brain regions. Nat Commun 13, 1799 (2022).

6. Campbell, S. S. & Tobler, I. Animal sleep: a review of sleep duration across phylogeny. Neurosci Biobehav Rev 8, 269–300 (1984).

7. Waters, F., Chiu, V., Atkinson, A. & Blom, J. D. Severe Sleep Deprivation Causes Hallucinations and a Gradual Progression Toward Psychosis With Increasing Time Awake. Front Psychiatry 9, 303 (2018).

8. Everson, C. A., Bergmann, B. M. & Rechtschaffen, A. Sleep deprivation in the rat: III. Total sleep deprivation. Sleep 12, 13–21 (1989).

9. Fatal Familial Insomnia – Symptoms, Causes, Treatment | NORD. https://rarediseases.org/rare-diseases/fatal-familial-insomnia/.

10. Diekelmann, S. & Born, J. The memory function of sleep. Nat Rev Neurosci 11, 114–126 (2010).

11. Frank, M. G. Erasing Synapses in Sleep: Is It Time to Be SHY? Neural Plast 2012, 264378 (2012).

12. Tononi, G. & Cirelli, C. Sleep function and synaptic homeostasis. Sleep Medicine Reviews 10, 49–62 (2006).

13. Sharma, S. & Kavuru, M. Sleep and Metabolism: An Overview. Int J Endocrinol 2010, 270832 (2010).

14. Xie, L. et al. Sleep Drives Metabolite Clearance from the Adult Brain. Science 342, 10.1126/science.1241224 (2013).

15. Foulkes, W. D. Dream reports from different stages of sleep. J Abnorm Soc Psychol 65, 14–25 (1962).

16. Hobson, J. A., Pace-Schott, E. F. & Stickgold, R. Dreaming and the brain: toward a cognitive neuroscience of conscious states. Behav Brain Sci 23, 793–842; discussion 904-1121 (2000).

17. Eichenlaub, J. et al. The nature of delayed dream incorporation (‘dream‐lag effect’): Personally significant events persist, but not major daily activities or concerns. J Sleep Res 28, e12697 (2019).

18. Cochen De Cock, V. Sleepwalking. Curr Treat Options Neurol 18, 6 (2016).

19. PubChem. Alfaxalone. https://pubchem.ncbi.nlm.nih.gov/compound/104845.

20. PubChem. Xenon. https://pubchem.ncbi.nlm.nih.gov/compound/23991.

21. Kelz, M. B. & Mashour, G. A. The Biology of General Anesthesia from Paramecium to Primate. Current Biology 29, R1199–R1210 (2019).

22. Dronkers, N. F., Plaisant, O., Iba-Zizen, M. T. & Cabanis, E. A. Paul Broca’s historic cases: high resolution MR imaging of the brains of Leborgne and Lelong. Brain 130, 1432–1441 (2007).

23. Packheiser, J. et al. A large-scale estimate on the relationship between language and motor lateralization. Sci Rep 10, 13027 (2020).

Cover photo made with biorender.com.

Click here or the image below to subscribe to our mailing list:

Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

image - 10 Big Unanswered Questions in Neuroscience Part 1

A link between COVID-19 and autoimmune encephalitis?

by Alanna | Aug 22, 2023 | PennNeuroKnow

August 23, 2023 | by Kara McGaughey, PennNeuroKnow and IAES Collaboration

A message from IAES Blog Staff:

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

——-

Introduction

The Covid 19 pandemic spread its insidious tentacles all over the world. Scientific papers, chapters of books and entire university courses can be counted on to outline and delve deep into the wide spread effects on all levels of society that Covid has caused. For the AE community we are not only affected by the general Covid effects but possibly, also, in relation to our own ongoing AE journeys. How does the Covid virus affect AE? Is there a link between Covid 19 and AE? Kara McGaughey from the PNK team has done a wonderful job helping us all better understand what can be understood about this possible relationship at this time and what it may mean for the future of AE research.

Coronavirus Disease (COVID-19) is an ongoing global health crisis with more than 760 million confirmed cases and nearly 7 million deaths reported by the World Health Organization as of June 2023.¹ However, as we enter into the fourth year of the pandemic, we’re beginning to understand that knowing the number of active cases of COVID-19 isn’t the whole story.

In this post, we will dive into the long-term consequences of COVID-19, with a focus on the potential link between COVID-19 and autoimmune encephalitis (AE). We will explore why scientists think these diseases might be connected as well as what implications these new, post-COVID cases can have for AE research.

What is the connection between COVID-19 and AE?

Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) is a newly-emerged virus that causes Coronavirus Disease 2019 (COVID-19). SARS-CoV-2 infection results in various systemic and respiratory symptoms such as fever, fatigue, cough, and difficulty breathing. In cases of severe disease, these symptoms can cause heart and lung failure, requiring hospitalization. However, the struggle isn’t always over once infection has subsided. Around 15% of patients have persistent symptoms for months after testing positive.^2-3These symptoms, often including fatigue and brain fog, can be debilitating. In many cases, a patient’s ability to carry out normal, everyday activities is profoundly affected. In a much, much smaller percentage of cases, the SARS-CoV-2 virus can also function as a trigger for some autoimmune diseases, like Guillain-Barré Syndrome (GBS), rheumatoid arthritis, and even autoimmune encephalitis (AE).^4-5

AE refers to a group of conditions that occur when the body’s immune system mistakenly attacks healthy brain tissue.⁵ The cause of AE is often unknown. However, experts say that, in some cases, exposure to certain bacteria or viruses may increase someone’s risk of AE. For example, infection with herpes simplex virus 1 (HSV-1) has been linked to later development of AE, particularly the anti-NMDA AE subtype.⁷

We are seeing something similar happening now with SARS-CoV-2 viral infections (and re-infections) leading to an uptick in the number of AE diagnoses. Case reports of this so-called “post-COVID AE” have come from all over the world — Iran, Canada, France, Italy, the United Kingdom, China, Sweden, India, Mexico, and the United States — and describe patients across a wide range of ages from 2 to 88.^4,8-9 A majority of these post-COVID AE diagnoses are for either limbic or anti-NMDA AE subtypes with patients experiencing headache, cognitive impairment, and seizures.⁴ Fortunately, a majority of patients respond well to treatment.⁴

How can SARS-CoV-2 infection lead to AE?

How exactly AE develops from SARS-CoV-2 infections is not yet fully understood. However, scientists do have some theories.

The “cytokine storm” and inflammatory cytokines:

Cytokines are small proteins that are crucial for controlling the immune system’s activity.¹⁰ Inflammatory cytokinesact as signals that tell the immune system to turn on, enabling the body to recognize and destroy foreign invaders (like the SARS-CoV-2 virus). Anti-inflammatory cytokines are responsible for dialing immune system activity back down once the threat has been neutralized. During the pandemic, you may have heard about COVID-19 causing the overproduction of inflammatory cytokines, known as a “cytokine storm.” With too many of these cytokines released in the body, immune system activity and inflammation can spiral out of control, leading to, in the worst cases, multi-organ failure.^4-6,11

Scientists think that one link between COVID-19 and AE is a particular inflammatory cytokine, IL-6, released during this storm.^5,12 Elevated levels of IL-6 are often found in patients with anti-NMDA AE.^11,13-14 In fact, they are considered a characteristic feature of this AE subtype.¹³ Given that many post-COVID AE cases are anti-NMDA, it is possible that high levels of IL-6 as a result of SARS-CoV-2 viral infection could be one reason for the increased risk of developing AE after COVID-19.

Accidental autoimmunity:

While we want an immune system that can recognize and react to foreign invaders (e.g., SARS-CoV-2, tumor cells, etc.), it is just as important that our own cells don’t get caught up in the crossfire. Fortunately, our immune system has evolved to both quickly and accurately distinguish outsiders from the body itself. However, sometimes in the face of viral infections that cause extreme inflammation, this protective, self-recognition feature goes awry and the body begins to produce antibodies that accidentally target its own tissue (“autoantibodies”). This autoantibody-induced self destruction is called autoimmunity.⁴It is possible that SARS-CoV-2 viral infections induce AE through an autoimmune process that generates antibodies targeting brain cells.

What implications might this have for AE research?

AE is notoriously rare and frequently misdiagnosed.¹⁵Evidence for a link between SARS-CoV-2 infections and the development of AE means more of the scientific spotlight is being given to AE. This increased awareness could make physicians more likely to explore AE as a possible diagnosis, decreasing the time patients spend in limbo waiting for answers and treatment. Perhaps more importantly, in scientific research, money and resources flow where attention goes. This could mean more funding for AE research and more AE clinical trials. Hopefully, this will lead to a better understanding not only of the relationship between COVID-19 and AE, but AE and autoimmunity more broadly.

A final note: It’s important to remember that getting infected or re-infected with COVID-19 doesn’t mean you will end up with AE. While there have been a fair number of case reports of post-COVID AE, it is still a rare outcome. Moreover, it is very difficult to establish any sort of causal link between SARS-CoV-2 infection and the later development of a disease. In most cases it is impossible to know whether some of these patients would have developed AE even without exposure to COVID-19. Nonetheless, the best path forward is to be aware of ongoing research and continue preventive measures, like wearing a mask in high-risk situations and making sure you stay up to date on COVID-19 vaccinations.

Work cited:

WHO Coronavirus (COVID-19) Dashboard. (n.d.). Retrieved May 1, 2023, from https://covid19.who.int
Nearly One in Five American Adults Who Have Had COVID-19 Still Have “Long COVID.” (2022, June 22).https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2022/20220622.htm
Lledó, G. M., Sellares, J., Brotons, C., Sans, M., Antón, J. D., Blanco, J., Bassat, Q., Sarukhan, A., Miró, J. M., & de Sanjosé, S. (2022). Post-acute COVID-19 syndrome: A new tsunami requiring a universal case definition. Clinical Microbiology and Infection, 28(3), 315–318. https://doi.org/10.1016/j.cmi.2021.11.015
Stoian, A., Stoian, M., Bajko, Z., Maier, S., Andone, S., Cioflinc, R. A., Motataianu, A., Barcutean, L., & Balasa, R. (2022). Autoimmune Encephalitis in COVID-19 Infection: Our Experience and Systematic Review of the Literature. Biomedicines, 10(4), 774. https://doi.org/10.3390/biomedicines10040774
Nabizadeh, F., Balabandian, M., Sodeifian, F., Rezaei, N., Rostami, M. R., & Naser Moghadasi, A. (2022). Autoimmune encephalitis associated with COVID-19: A systematic review. Multiple Sclerosis and Related Disorders, 62, 103795.https://doi.org/10.1016/j.msard.2022.103795
Payus, A. O., Jeffree, M. S., Ohn, M. H., Tan, H. J., Ibrahim, A., Chia, Y. K., & Raymond, A. A. (2022). Immune-mediated neurological syndrome in SARS-CoV-2 infection: A review of literature on autoimmune encephalitis in COVID-19. Neurological Sciences, 43(3), 1533–1547. https://doi.org/10.1007/s10072-021-05785-z
Armangue, T., Spatola, M., Vlagea, A., Mattozzi, S., Cárceles-Cordon, M., Martinez-Heras, E., Llufriu, S., Muchart, J., Erro, M. E., Abraira, L., Moris, G., Monros-Giménez, L., Corral-Corral, Í., Montejo, C., Toledo, M., Bataller, L., Secondi, G., Ariño, H., Martínez-Hernández, E., … Zabalza, A. (2018). Frequency, symptoms, risk factors, and outcomes of autoimmune encephalitis after herpes simplex encephalitis: A prospective observational study and retrospective analysis. The Lancet Neurology, 17(9), 760–772. https://doi.org/10.1016/S1474-4422(18)30244-8
Saffari, P., Aliakbar, R., Haritounian, A., Mughnetsyan, R., Do, C., Jacobs, J., Hoffer, J., Arieli, R., Liu, A. K., Saffari, P., Aliakbar, R., Haritounian, A., Mughnetsyan, R., Do, C., Jacobs, J., Hoffer, J., Arieli, R., & Liu, A. K. (2023). A Sharp Rise in Autoimmune Encephalitis in the COVID-19 Era: A Case Series. Cureus, 15(2). https://doi.org/10.7759/cureus.34658
Mekheal, E., Mekheal, M., Roman, S., Mikhael, D., Mekheal, N., Manickam, R., Mekheal, E., Mekheal, M., Roman, S., Mikhael, D., Mekheal, N., & Manickam, R. (2022). A Case Report of Autoimmune Encephalitis: Could Post-COVID-19 Autoimmunity Become a Lethal Health Issue? Cureus, 14(6). https://doi.org/10.7759/cureus.25910
Kim, E. Y., & Moudgil, K. D. (2008). Regulation of autoimmune inflammation by pro-inflammatory cytokines. Immunology Letters, 120(1), 1–5. https://doi.org/10.1016/j.imlet.2008.07.008
Byun, J.-I., Lee, S.-T., Moon, J., Jung, K.-H., Sunwoo, J.-S., Lim, J.-A., Kim, T.-J., Shin, Y.-W., Lee, K.-J., Jun, J.-S., Lee, H. S., Lee, W.-J., Kim, Y.-S., Kim, S., Jeon, D., Park, K.-I., Jung, K.-Y., Kim, M., Chu, K., & Lee, S. K. (2016). Distinct intrathecal interleukin-17/interleukin-6 activation in anti-N-methyl-d-aspartate receptor encephalitis. Journal of Neuroimmunology, 297, 141–147. https://doi.org/10.1016/j.jneuroim.2016.05.023
Liu, J., Li, S., Liu, J., Liang, B., Wang, X., Wang, H., Li, W., Tong, Q., Yi, J., Zhao, L., Xiong, L., Guo, C., Tian, J., Luo, J., Yao, J., Pang, R., Shen, H., Peng, C., Liu, T., … Zheng, X. (2020). Longitudinal characteristics of lymphocyte responses and cytokine profiles in the peripheral blood of SARS-CoV-2 infected patients. EBioMedicine, 55, 102763.https://doi.org/10.1016/j.ebiom.2020.102763
Liu, J., Liu, L., Kang, W., Peng, G., Yu, D., Ma, Q., Li, Y., Zhao, Y., Li, L., Dai, F., & Wang, J. (2020). Cytokines/Chemokines: Potential Biomarkers for Non-paraneoplastic Anti-N-Methyl-D-Aspartate Receptor Encephalitis. Frontiers in Neurology, 11.https://www.frontiersin.org/articles/10.3389/fneur.2020.582296
Byun, J.-I., Lee, S.-T., Moon, J., Jung, K.-H., Sunwoo, J.-S., Lim, J.-A., Kim, T.-J., Shin, Y.-W., Lee, K.-J., Jun, J.-S., Lee, H. S., Lee, W.-J., Kim, Y.-S., Kim, S., Jeon, D., Park, K.-I., Jung, K.-Y., Kim, M., Chu, K., & Lee, S. K. (2016). Distinct intrathecal interleukin-17/interleukin-6 activation in anti-N-methyl-d-aspartate receptor encephalitis. Journal of Neuroimmunology, 297, 141–147. https://doi.org/10.1016/j.jneuroim.2016.05.023
Lancaster, E. (2016). The Diagnosis and Treatment of Autoimmune Encephalitis. Journal of Clinical Neurology (Seoul, Korea), 12(1), 1–13. https://doi.org/10.3988/jcn.2016.12.1.1

Click here or the image below to subscribe to our mailing list:

Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

image - A link between COVID-19 and autoimmune encephalitis?

IVIG Side Effects: When to Seek Medical Attention

by Alanna | Aug 8, 2023 | Special Series

August 8, 2023 | By Cindy Berry, RN, BSN. Reprinted with permission from IG Living

Introduction from the IAES Blog Team:

It is with great pleasure that IAES presents to you an article reprinted with permission by IG Living Magazine.

The IG (or Immune Globulin) community not only produces an online magazine but also a podcast and offers other resources for all those taking IG, interested in having IG as a part of their medication regime and for all those interested in IG in general. For further resources from IG Living feel free to peruse at their content at: https://www.igliving.com/magazine/subscribe.aspx

For many AE Warriors, IVIG is a staple in our treatment toolbox.

IVIG infusions are something most with AE have had at one time or another as a treatment option.

Many with AE, our caregivers and loved ones have been curious about the possible side effects of IVIG. What should we expect, how concerned should we be, when to seek medical intervention? IG Living has done a wonderful job in answering many of our IVIG side effects questions. We hope you gain as much information as we have, and we thank IG Living for let us republish this wonderful article.

——

This IGL blog is sponsored by NuFACTOR Specialty Pharmacy.

Understanding the most common, mild side effects of immune globulin (IG) therapy is important when setting proper expectations during treatment. It is also important to recognize when unexpected side effects occur, and what to do about them.

It’s necessary to take measures to minimize side effects when receiving IG therapy . These measures include staying well-hydrated, taking pre-medications as ordered and listening to your body. But, even when diligently taking these measures, unexpected side effects sometimes occur. With the exception of anaphylaxis, most of these side effects generally occur after an infusion, and they are usually considered either moderate or severe. In every instance, they need to be evaluated by a physician, and in some cases, medical intervention is necessary.

Moderate side effects are those that usually affect your daily activities such as going to work, sleeping well, eating and even showering. The most common reported moderate side effect is a headache lasting more than 24 hours with a pain rate of 6 to 8 on a scale of 1 to 10. This means taking medications such as Tylenol or Advil does not help alleviate symptoms. Sometimes, this headache can progress into a more serious headache called aseptic meningitis.

Aseptic meningitis occurs when the IG drug has caused irritation of the meninges in the brain, resulting in symptoms that present like meningitis. This unexpected side effect can occur during an infusion or after an infusion. Patients experience an excruciating headache, as well as neck pain and stiffness, and generally, patients will have severe sensitivity to light. Vomiting is also very common. If these symptoms present, the patient should go to the emergency room for evaluation. Usually, IV hydration, IV steroids, IV antiemetics and IV pain medication are given to help alleviate symptoms. With proper medical intervention, patients usually feel better within 24 to 48 hours.

Renal dysfunction is another unexpected side effect that can be caused by IG therapy. This side effect is more common in patients who are over the age of 65, and who have pre-existing conditions such as hypertension and diabetes. Patients should pay particular attention to any changes in urination, including color changes (dark or amber colored urine can signify a change in kidney function) and a decrease in urine output. If either or both symptoms are experienced, a physician should be notified, and the patient should be evaluated immediately. Since renal dysfunction is a potential serious adverse event, it is important to have periodic renal testing, which is easily accomplished with blood work ordered by a physician.

Thrombolytic events, or clot formation, have been reported in very few cases. Although this is a very uncommon side effect, it is important to be aware of the signs and symptoms. Patients at greatest risk include those with a history of thrombotic events, history of diabetes, advanced age, multiple cardiovascular risk factors, impaired cardiac output and long periods of immobilization. If a clot is formed, this usually occurs after an infusion. Symptoms of a possible thrombolytic event include severe chest pain and difficulty breathing, which could be an indication of a pulmonary embolism or possible myocardial infarction. If severe chest pain is experienced at any time, immediate attention is needed, and 911 should be called.

The final, most serious side effect that is unlikely to occur is anaphylaxis. It is the least-likely serious side effect that can occur. Anaphylaxis usually occurs within the first 15 to 30 minutes of an infusion. It is characterized by a sudden onset of any of the following symptoms: difficulty breathing (chest tightness, bronchospasms, wheezing), changes in the gastrointestinal system (severe cramps, vomiting, diarrhea), cardiovascular changes (low pulse rate, high pule rate, hypotension/shock, chest pain) or skin changes (hives, angioedema, rash). If anaphylaxis is suspected, 911 should be called immediately. If it occurs during your infusion, your nurse will administer emergency medications to help control the symptoms. Medical attention is required and necessary, and 911 should be called despite the administration of emergency medications.

Although the list of unexpected side effects may seem scary, it is important to remember that while most patients will experience mild side effects, they do not typically experience serious ones. In any event, it is always important to understand them and to have your physician’s number ready. Always inform your healthcare team of any changes in response to IG therapy.

Immune Globulin Therapy Side Effects When receiving IG therapy – either by IV administration or subcutaneous administration, it is important to understand the difference between side effects that are expected and side effects that are not expected. Since side effects may have an onset after drug administration, it is important for the patient and/or caregiver to identify when to seek medical attention.

—

Click here or the image below to subscribe to our mailing list :

Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

A Mighty Miracle

by Alanna | Jul 26, 2023 | AE Warrior Personal Stories

July 26, 2023 | By Rebecca Jablon

Introduction from the IAES Blog Team:

It is our honor and pleasure to bring to you the story of a young boy’s journey into the uncertain and terrifying world of being diagnosed with Autoimmune Encephalitis from the heart of a mother. A mother who thru faith, resilience, determination and, above all, love found help across the miles and a fierce desire to assist others and raise awareness!

——-

Whether you are a parent or grandparent to a child who has been thrown into the world of autoimmune encephalitis, or into the world of rare disabilities ( or a physician, therapist, special education teacher, or social worker…) I was moved to publish my story “To Add a Miracle” to provide you with further insight and strength. I wrote with absolute candor and honesty, sprinkled with a bit of humor, in an attempt to accurately portray the emotional rollercoaster that we have experienced.

Our son, Yehuda’s, steep fall into the world of autoimmune encephalitis began just days after the holiday of Hanukkah, the Holiday of Miracles, four- years ago, at the age of five. He was born just days before the Holiday of Hanukkah. As I approached the Hanukkah season this year and Yehuda’s ninth birthday, I suddenly felt a strong drive to sit down. And to write. And to write more. Perhaps this is not a coincidence.

At the beginning of our journey/ FALL into the unknown, the International Autoimmune Encephalitis Society stood as one of the lights illuminating our absolute confusion and darkness. The brave volunteers, often facing current or past struggles of their own, held out lights of information, direction, medical advice, and most importantly glimmers of hope, for a family struggling far away in Israel, where knowledge of autoimmune encephalitis in the medical world is even more limited. At the time, I was able to connect with only one mother living here in Israel, who was able to hold my hand and guide me on our journey. I gathered additional armor and strength from the mothers whom I could reach out to through the AE website. I was ready to grab onto anything and anyone who understood. I was desperate. Who or What had overnight stolen our son’s words, skills, and identity?

How can a mother accept an unknown or rare diagnosis?

How can she grapple with an experimental and even further unknown treatment plan?

How can a mother not throw up her hands in total despair when top neurologists eventually throw up their hands?

How can she survive when she screams out, yet no one can answer,

“What suddenly happened to my five- year old son?”

While many books have been written highlighting the challenges of raising a child with disabilities, as you all are painfully aware, autoimmune encephalitis is a recently discovered and often misunderstood illness with a shocking onset. My writing of To Add a Miracle was fueled by my intense desire to spread awareness and hope, to strengthen mothers, fathers, and families, as they bravely journey toward recovery or increased acceptance and strength.

I will never forget when my then five-year-old Yehuda desperately called out to me as I left his bedroom one night, marking the beginning of our descent into the unknown,

“Imma (Hebrew for Mother), my brain is broken. If I die, will you…”

Total confusion, darkness, and piles of despair. I wish that at the sudden onset of Yehuda’s illness, I had known about, and did not have to wait to discover the collective voices of the International Autoimmune Encephalitis Society, to call out to me, and to hear my cries… to help me to not feel totally alone in my struggles.

It is my hope and prayer that my book will provide you with an additional dose of strength in order to navigate the bumpy ride, that is our lives with special needs children. It is my dream to be able to continue to help other parents, using all of the tools, both medical and sometimes emotional, that I have gathered upon our journey with Yehuda. As I describe in the book, there is nothing that gives me more comfort than seeing another child and family progress and advance, even if that particular treatment did not advance Yehuda.

Someone recently asked me, “So what do you mean by adding a miracle?” Please order and delve into my book to find out. There is no quick answer.

Thank you to all of the administrators and volunteers of the International Autoimmune Encephalitis Society, for allowing me to take part in their holy work in my attempt to spread awareness of autoimmune encephalitis, through the writing of my book.

To Add A Miracle on Amazon

Book Description:

To Add A Miracle details with raw honesty, sprinkled with moments of humor and laughter, the dark and light shadows of the Jablon family’s journey; the story also highlights the tremendous strength of Yehuda’s siblings and selected “messengers of miracles” along the way.

With no filters, the story tells the author’s emotional journey as a mother in distress, facing piles of despair, culminating in a greater acceptance of the unacceptable, and a powerful recognition of the miracles that Yehuda has added to her family’s life.

While many books have been written highlighting the challenges of raising a child with disabilities, autoimmune encephalitis is a recently discovered and often misunderstood illness with a shocking onset.

The writing of To Add A Miracle was fueled by the author’s intense desire to spread awareness and hope, to strengthen mothers, fathers, families, and medical practitioners, as they bravely journey toward recovery or increased acceptance and strength.

Rebecca Jablon, the author of To Add A Miracle, tells the story of her sudden and dramatic fall into the world of autoimmune encephalitis, and resulting diagnosis of autism for her son, Yehuda.

How can a mother accept an unknown or rare diagnosis?
How can she grapple with an experimental and even further unknown treatment plan?
How can a mother not throw up her hands in total despair when top neurologists eventually throw up their hands?
How can she survive when she screams out, yet no one can answer, “What suddenly happened, overnight, to my five-year-old son?!!”

No stranger to the world of rare illnesses, Yehuda’s sudden overnight descent into the unknown rocked the author’s family. Who or What had stolen her son’s words, skills, and identity?

Click here or the image below to subscribe to our mailing list :

Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

Who do you become when you are sleepy?

by Alanna | Jul 11, 2023 | PennNeuroKnow

July 12, 2023 | by Lindsay Ejoh, PennNeuroKnow and IAES Collaboration

A message from IAES Blog Staff:

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

For all of us with AE, sleep can be an ongoing issue whether it be too little, too much, interrupted sleep cycles and everything in-between! Sleep issues often go hand in hand with an AE diagnosis. PNK author Lindsay Ejoh wrote this piece for the PNK weekly series and graciously gave IAES permission to publish it in our monthly series. We hope you find this as informative as we have!

——-

Introduction

Sleep experts recommend that most adults get 7-9 hours of good-quality sleep each day^1,2 to avoid the myriad of issues that can occur when the brain and body are sleep-deprived. We all know what it is like to be tired. We may feel cranky and sluggish, as well as physically and mentally exhausted. We may also face issues with memory and attention³, emotional regulation, and diminished sex drive^4,11. It is hard to feel like yourself when sleep-deprived- so what occurs in the brain during sleep deprivation, and how does it affect our daily lives?

Memory

As a child, I remember learning to trick my mother, a sleep-deprived emergency room nurse that worked the night shift, by asking her for permission to do things while she was coming home from work in the mornings, half-asleep. When I’d approach her in bed to ask for permission to go on a sleepover across town or to eat food we were saving for an occasion, she would always say yes. Eventually, she caught on, and warned me against waiting until she was sleepy to get my way, but the reason it worked at first is because sleep deprivation impacts decision-making⁵.

It also affects short-term memory, so as a result, my mother would never remember giving her approval. Long-term memory is affected as well, as sleep is very important for consolidation, or storage of memories. This is also why you may not remember everything you studied after cramming for an exam all night.

Reaction time

Being awake is not the same thing as being alert. When we are sleepy, we tend to have slow reaction times, or time to respond to a change in our environment. This can have devastating effects for those who operate cars and other heavy machinery while sleepy and can be dangerous for people who work with under these conditions. Sleep deprivation can make you 70% more likely to get into work-place accidents, which happen at higher rates in people with insomnia⁶. Additionally, missing just a couple hours of sleep can substantially increase the risk of having a car accident⁷. It may seem in the moment like you can stay awake while driving, but as explained in a previous NeuroKnow article, going 24 hours without sleep can be just as dangerous as driving drunk.

Changes in the brain

Sleep deprivation impacts many regions of your brain, but two are of notable importance: amygdala and prefrontal cortex.

Amygdala

Scientists can measure brain activity by taking functional magnetic resonance imaging (fMRI) scans. Using this method, researchers found that sleep deprivation leads to a hyperactive amygdala³. The amygdala is critical for emotional regulation, and its dysfunction may be related mood issues that occur from sleep deprivation. A single sleepless night can trigger a 30% increase in anxiety levels⁹, due to the loss of ability to regulate emotions or deal with stress, and people with anxiety disorders also have hyperactive amygdalae when faced with unpleasant changes in their environment¹⁰. In other words, sleep deprivation causes disruption in emotional centers in the brain, which is linked to increased anxiety.

Prefrontal Cortex

Another brain region with altered activity during sleep deprivation is the prefrontal cortex, which is important for rational thinking and decision-making³. This region has decreased activity during sleep deprivation, and these activity patterns are associated with impaired judgment, a common symptom of sleep deprivation.

Chronic sleep deprivation and sleep apnea

Most of us have experienced sleep-deprivation in our lives, but for some, it is the norm. People who suffer from inadequate sleep for a prolonged period of time (weeks to years) are in a state of chronic sleep deprivation⁶. Many people wake up in the mornings feeling symptoms of sleep deprivation despite getting a long night of sleep, which may be indicative of a sleep disorder known as sleep apnea. Patients with sleep apnea wake up over a hundred times throughout the night, due to difficulty breathing¹². A research lab in Australia found that sleep apnea patients have altered brain activity during wakefulness¹³. Certain parts of their brains “go offline” briefly, despite being awake, and brain activity resembles that of a sleeping person^14. Sleep disorder patients aren’t the only ones that experience this- it can occur from other forms of sleep deprivation. When sleep intrudes into the waking brain, this can lead to errors in tasks like driving. Despite being abnormal for humans, this brain activity phenomenon is not uncommon in the animal kingdom. Some animals like seals and dolphins sleep with half of their brains “awake” while the other halves are “asleep.”

Conclusion

Neuroscientists are working to understand the neurobiological consequences of sleep deprivation, so that we can inform and treat people who must continue to perform daily tasks despite running on little sleep. Though harmful for the brain, sleep deprivation is a normal part of daily life for 30-40% of US adults¹⁵, including parents of newborns, procrastinating college students, night-shift workers, military and medical personnel, sleep disorder patients, and many others. We live in a sleep-deprived society, where people are often celebrated for trading rest for productivity. I encourage you to take this as your sign to go to bed early tonight- you are not yourself when you’re sleepy!

References

Watson NF, Badr MS, Belenky G, et al. Recommended amount of sleep for a healthy adult: a joint consensus statement of the American Academy of Sleep Medicine and Sleep Research Society. Sleep. 2015;38(6):843–844.
Consensus Conference Panel, Watson, N. F., Badr, M. S., Belenky, G., Bliwise, D. L., Buxton, O. M., Buysse, D., Dinges, D. F., Gangwisch, J., Grandner, M. A., Kushida, C., Malhotra, R. K., Martin, J. L., Patel, S. R., Quan, S. F., Tasali, E., Non-Participating Observers, Twery, M., Croft, J. B., Maher, E., … Heald, J. L. (2015). Recommended Amount of Sleep for a Healthy Adult: A Joint Consensus Statement of the American Academy of Sleep Medicine and Sleep Research Society. Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine, 11(6), 591–592. https://doi.org/10.5664/jcsm.4758
Krause, A. J., Simon, E. B., Mander, B. A., Greer, S. M., Saletin, J. M., Goldstein-Piekarski, A. N., & Walker, M. P. (2017). The sleep-deprived human brain. Nature reviews. Neuroscience, 18(7), 404–418. https://doi.org/10.1038/nrn.2017.55
Chen, K. F., Liang, S. J., Lin, C. L., Liao, W. C., & Kao, C. H. (2016). Sleep disorders increase risk of subsequent erectile dysfunction in individuals without sleep apnea: a nationwide population-base cohort study. Sleep medicine, 17, 64–68. https://doi.org/10.1016/j.sleep.2015.05.018
Rasch, B., & Born, J. (2013). About sleep’s role in memory. Physiological reviews, 93(2), 681–766. https://doi.org/10.1152/physrev.00032.2012
Suni, E. (2023, April 5). The relationship between sleep and workplace accidents. Sleep Foundation. Retrieved April 26, 2023, from https://www.sleepfoundation.org/excessive-sleepiness/workplace-accidents#references-197012
AAA. (2016, December 6). Missing 1-2 hours of sleep doubles crash risk: Study reveals the dangers of getting less than 7 hours of sleep. ScienceDaily. Retrieved April 26, 2023 from www.sciencedaily.com/releases/2016/12/161206110235.htm
Wong, M. M., Robertson, G. C., & Dyson, R. B. (2015). Prospective relationship between poor sleep and substance-related problems in a national sample of adolescents. Alcoholism, clinical and experimental research, 39(2), 355–362. https://doi.org/10.1111/acer.12618
Ben Simon, E., Rossi, A., Harvey, A. G., & Walker, M. P. (2020). Overanxious and underslept. Nature human behaviour, 4(1), 100–110. https://doi.org/10.1038/s41562-019-0754-8
Etkin, A., & Wager, T. D. (2007). Functional neuroimaging of anxiety: a meta-analysis of emotional processing in PTSD, social anxiety disorder, and specific phobia. The American journal of psychiatry, 164(10), 1476–1488. https://doi.org/10.1176/appi.ajp.2007.07030504
Sleep Center of Middle Tennessee. (2022, June 22). Sleep deprivation and its effects on the brain. Sleep Centers of Middle Tennessee. Retrieved April 26, 2023, from https://sleepcenterinfo.com/blog/sleep-deprivation-effects-on-brain/
Slowik, J. M., Sankari, A., & Collen, J. F. (2022). Obstructive Sleep Apnea. In StatPearls. StatPearls Publishing.
Hung, C. S., Sarasso, S., Ferrarelli, F., Riedner, B., Ghilardi, M. F., Cirelli, C., & Tononi, G. (2013). Local experience-dependent changes in the wake EEG after prolonged wakefulness. Sleep, 36(1), 59–72. https://doi.org/10.5665/sleep.2302
Mannix, L. (2019, January 27). Your brain could be sleeping … even while you’re awake. The Sydney Morning Herald. Retrieved April 26, 2023, from https://www.smh.com.au/national/your-brain-could-be-sleeping-even-while-you-re-awake-20190124-p50tgg.html
Centers for Disease Control and Prevention. (2022, November 2). Adults – sleep and sleep disorders. Centers for Disease Control and Prevention. Retrieved April 26, 2023, from https://www.cdc.gov/sleep/data-and-statistics/adults.html

Cover image by Karollyne Videira Hubert on Unsplash

References

Zeng, J. & James, L. C. Intracellular antibody immunity and its applications. PLOS Pathog. 16, e1008657 (2020).
CDC. COVID-19 and Your Health. Centers for Disease Control and Preventionhttps://www.cdc.gov/coronavirus/2019-ncov/your-health/about-covid-19/antibodies.html (2020).
Elkon, K. & Casali, P. Nature and functions of autoantibodies. Nat. Clin. Pract. Rheumatol. 4, 491–498 (2008).
Hermetter, C., Fazekas, F. & Hochmeister, S. Systematic Review: Syndromes, Early Diagnosis, and Treatment in Autoimmune Encephalitis. Front. Neurol. 9, 706 (2018).
Graus, F. et al. A clinical approach to diagnosis of autoimmune encephalitis. Lancet Neurol. 15, 391–404 (2016).
Anti-NMDA receptor encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/anti-nmda-receptor-encephalitis/.
Anti-AMPAR encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/anti-ampar-encephalitis/.
Anti-GABAA receptor encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/anti-gabaa-receptor-encephalitis/.
Anti-GABAB receptor encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/anti-gabab-receptor-encephalitis/.
LGI1-antibody encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/lgi1-antibody-encephalitis/.
CASPR2-antibody encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/caspr2-antibody-encephalitis/.
Malter, M. P., Helmstaedter, C., Urbach, H., Vincent, A. & Bien, C. G. Antibodies to glutamic acid decarboxylase define a form of limbic encephalitis. Ann. Neurol. 67, 470–478 (2010).
Voltz, R. & Eichen, J. A Serologic Marker of Paraneoplastic Limbic and Brain-Stem Encephalitis in Patients with Testicular Cancer. N. Engl. J. Med. (1999).
Graus, F. & Dalmau, J. Paraneoplastic neurological syndromes in the era of immune-checkpoint inhibitors. Nat. Rev. Clin. Oncol. 16, 535–548 (2019).
Lancaster, E. Encephalitis and antibodies to synaptic and neuronal cell surface proteins. (2011).

Click here or the image below to subscribe to our mailing list:

Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

image - Who do you become when you are sleepy?

You’re alive, you’re breathing, and growing older is a privilege

by Alanna | Jun 27, 2023 | AE Warrior Personal Stories

June 28, 2023 | By M Ledferd

Introduction from the IAES Blog Team:

The staff at IAES brings to you the inspirational thoughts and feelings of a mighty AE Warrior shortly after his AE journey began. M Ledferd has put into words with heartfelt elegance the way we have all felt at one point or another on our journey. His gift with prose has brought to life our deepest feelings and resonated with our hearts and minds. We hope you enjoy this as much as we have! Thank you M!

——-

For those AE survivors, let gratitude carry us. For the caretakers, bless you. For those still struggling, please keep fighting the good fight. We are all here for you.

When I first awoke in the hospital, I felt like a 90-year-old man. A weak, tired old man with no autonomy. A man that could barely move or speak. A man at the end of his life.

Coming in and out of consciousness, I had a lot to think about. (Because I had nothing else to do.)

I realized that people generally saw their lives in stages: a beginning, middle and end. With a middle age that seemed to go on forever. That’s because we have no idea when the end is near. It’s hard to gauge and probably doesn’t even exist in most people’s minds. We simply can’t fathom it. It’s so unknown and far away. But as sure as the sky is blue it eventually reaches us all.

We’re all so different yet all the same. We go from rambunctious, fearless little kids with endless curiosities, to busy, hard-working adults, generating income so that hopefully one day we can retire, where the hours stretch on for days (just like it did when we were little kids).

In retirement, we are sold that we can do anything we want. From reading books to painting, to just chilling on the beach, or seeing the world by cruise ship, or just slow swinging on a porch with an old cat in our lap. I dunno, it’s different for everyone. What I do know is that I had obviously miscalculated a long middle for a short end. Crazy how that happens.

Laying there, motionless, with the chirps and beeps of hospital equipment, the days and nights blurred together. I didn’t know what day it was. But it didn’t matter as time had no relevance. I realized I has spent so much of my life working hard and saving up for a future that would never come. I felt stupid. Decades of grinding, all for what.

I tried to stay positive. To look on the bright side of things. To reflect. I had my fair share of adventures and vacations. My fair share of accomplishments, of friendships. I once took a 3-month solo motorcycle trip across the USA (remember that?). Damn, that was cool.

I got to see the world and was even beginning a new family with my wonderful spouse. I regretted not being able to raise my daughter until she was at least 20. Let me live another 20 years, I said, so I can instill in her self-reliance, self-discipline, curiosity, and grit. To let her know that anything is possible. But I knew that all would eventually be ok. My wife is a warrior with a great big supportive family. And I mean, there’s nothing I can do about it now.

I had a lot of feelings but above all I was calm and grateful. I was grateful I got to experience most of what life had to offer. The exciting parts. The sad parts. The whole gamut of human experience from birth to baby—which is more than anyone is guaranteed. Being in that dark, desolate place in my mind. That place where I had no external voice, I still had gratitude. But it was a resigned gratitude. One with plenty of I-couldas, I-wouldas, and I shouldas.

Coming back into consciousness, hearing the same high-pitched, rhythmic beeping from the heart-monitoring machine, I knew I had been there for a very long time. I felt like I wasn’t getting any better. Every day was just like the last. Groundhog Day. I felt like, maybe, I would be in the hospital forever in that state. Even if I hadn’t died I felt like a ghost. To be seen but not to see. To be touched but not to touch. A fly on the wall of a busy hospital with ears instead of eyes. A vegetable frozen in time, with tubes and wires coming out of everywhere.

Then just like that, like some kind of reverse “Benjamin Button” disease, I was blasted back into reality, back to my 40-year-old body. I had aches and pains all over, shed a lot of tears, but, damn, it felt good to sit up on my own, to just breathe again. It had been 23 days, with 16 of them in the ICU. I would spend the next 11 days relearning everything. How to walk. How old my daughter was. How to use my phone. But I was back.

Today (April 12, 2023) marks the 100th day of leaving the hospital. Though I’ve been back probably half a dozen times since, they have all been for check-ups, bone density scans, MRI’s, physical therapy, and all ending with my favorite part—going home.

I am not sure what the point of this post is. I guess it’s for you to envision yourself where I was. A dead man with no future, with the woulda, coulda, shouldas. To put yourself there and see if you would change anything when you were granted your wish. To realize that most everything that stresses you out right now probably doesn’t even matter.

You’re alive, you’re breathing, and growing older is a privilege. Don’t waste it with your head down.

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Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

What are intracellular and extracellular antibodies and what do the differences mean for patients with autoimmune encephalitis?

by Alanna | Jun 13, 2023 | PennNeuroKnow

June 14, 2023 | by Catrina Hacker, PennNeuroKnow and IAES Collaboration

A message from IAES Blog Staff:

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

——-

Introduction

There are many subtypes of autoimmune encephalitis (AE) that vary in their causes, the symptoms that patients experience, and what treatments are most effective. One of several factors that distinguish these different subtypes of AE is whether they involve intracellular or extracellular antibodies. In this post we will explore exactly what these terms mean and how they contribute to the differences between types of AE.

What are intracellular and extracellular antibodies?

When a virus or bacteria enters our body, our immune system mounts an attack to destroy the foreign invader and protect us from harm. If our immune system is like an army ready for battle, then antibodies are like the scouts sent ahead of the battalion, patrolling for signs of a threat. Just like security personnel might scan ID badges to determine who is allowed in a building, each antibody is tasked with looking for a particular feature of something that the body has deemed harmful, called an antigen¹. You might have heard antibodies discussed in reference to COVID-19, where infection with COVID-19 or vaccination can cause your body to produce antibodies that recognize features of the COVID-19 virus². When antibodies are already present in the body, they can recognize the newly-arrived COVID-19 virus and mount an attack more quickly, helping to avoid a more serious infection.

This ability to quickly mount a defense against a threat before getting too sick is what makes antibodies an important part of our body’s immune system army. However, antibodies are only helpful if they recognize and defend against foreign substances that are harmful. Unfortunately, this isn’t the case in AE. Patients with AE have antibodies that bind to proteins found in their own cells, called autoantibodies (the prefix “auto” means self, so autoantibodies are antibodies that bind the body’s own proteins)³. Autoantibodies trigger the body’s immune system to attack itself, leading to the many symptoms of AE.

Each antibody can recognize only a small part of a whole cell, and there are many different parts of a cell that an antibody can recognize. What distinguishes extracellular from intracellular antibodies is whether their antigen (the ID badge they’re looking for) is inside or outside of the cell^1,4. Extracellular antibodies recognize antigens that are on the outer surface of the cell (“extra” meaning outside). Conversely, intracellular antibodies recognize antigens that are inside the cell (“intra” meaning inside). The intracellular antibodies inside the cell trigger a different set of immune reactions than the extracellular antibodies outside of the cell.

Which kinds of AE involve intracellular versus extracellular antibodies?

Subtypes of AE are distinguished by what kind of autoantibody a patient has⁴, which is why they are typically named after the antigen that the autoantibody recognizes. For example, patients with anti-NMDAR AE have antibodies that recognize NMDA receptors. Types of AE associated with antigens outside the cell involve extracellular antibodies and types of AE associated with antigens inside the cell involve intracellular antibodies.

Many of the most common subtypes of AE involve extracellular antibodies^4,5. Most are associated with antibodies that recognize a kind of protein that sits on the surface of the cell called a receptor. Receptors recognize and bind specific molecules and send signals that tell the cell how to respond. The receptors on neurons, a type of brain cell, are especially important because one neuron communicates with another by releasing molecules that can be recognized by the other neuron’s receptors. When antibodies bind the receptors, they activate an immune response and disrupt the ability of those receptors to participate in neural signaling. This leads to the many neurological symptoms of AE. Subtypes with these kinds of antibodies include anti-NMDAR AE⁶, anti-AMPAR AE⁷, anti-mGLUR5 antibody encephalitis^4,5, GlyR antibody encephalitis⁴, anti-GABA_aAE⁸, and anti-GABA_b AE⁹. Several other extracellular antibodies associated with AE have antigens that sit on the cell’s surface and help with neuronal signaling but aren’t receptors themselves. Subtypes of AE with these kinds of antibodies include LGI1-antibody encephalitis¹⁰, CASPR2-antibody encephalitis¹¹, and DPPX-antibody encephalitis^4,5.

Subtypes of AE associated with intracellular antibodies are less common^4,5. One example is GAD-antibody encephalitis¹². Patients with this form of AE have antibodies that target Glutamic Acid Decarboxylase (GAD), a protein found inside the cell that is needed to synthesize GABA, a special type of molecule that is necessary for some kinds of neural signaling. Other subtypes of AE that target intracellular proteins are anti-Hu encephalitis⁵, and Ma2-antibody encephalitis¹³.

How are subtypes of AE associated with intracellular antibodies different from subtypes of AE associated with extracellular antibodies?

One big distinction is that most subtypes of AE associated with intracellular antibodies are also associated with tumors⁴. These subtypes of AE are called paraneoplastic. Paraneoplastic AE can occur when tumor cells express proteins on their surface that are normally expressed elsewhere. Sometimes this includes proteins that are normally found inside healthy neurons. To recognize and fight the tumor, the body’s immune system creates antibodies that recognize these proteins. These antibodies don’t distinguish the proteins found in the tumor cells from the healthy proteins found in neurons, so when they reach the brain, they also bind the naturally-occurring proteins in neurons and trigger the immune response responsible for the symptoms of AE¹⁴.

Patients with subtypes of AE associated with intracellular antibodies also tend to have poorer outcomes and respond worse to immunotherapy than patients with subtypes associated with extracellular antibodies^4,15. This is because many of the symptoms of AE associated with extracellular antibodies are thought to result from the antibodies disrupting the normal function of the cell-surface proteins that they target. Conversely, the presence of intracellular autoantibodies typically accompanies an immune response against neurons more broadly that results in neuronal death. This means that successful treatment can often reverse symptoms of AE resulting from extracellular antibodies, as limiting the action of the antibodies allows the neurons to function normally, whereas even after treatment, symptoms do not typically reverse in subtypes of AE associated with intracellular antibodies, as many neurons have already died. For patients with paraneoplastic AE, removing the tumor is also an important step toward relieving symptoms¹⁵.

Despite general differences in outcomes for subtypes of AE associated with extracellular and intracellular antibodies, early detection and treatment are key to successful outcomes for all subtypes of AE⁴. Determining which type of AE a patient has can have an important impact on how doctors choose to treat and manage the disease. This distinction is also important for researchers developing new treatments and possible cures, as approaches that might work for one type of AE may not work for others. Determining which patients will be most receptive to a particular new treatment leads to better outcomes for clinical trials, which means more treatment options for all patients.

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References

Zeng, J. & James, L. C. Intracellular antibody immunity and its applications. PLOS Pathog. 16, e1008657 (2020).
CDC. COVID-19 and Your Health. Centers for Disease Control and Preventionhttps://www.cdc.gov/coronavirus/2019-ncov/your-health/about-covid-19/antibodies.html (2020).
Elkon, K. & Casali, P. Nature and functions of autoantibodies. Nat. Clin. Pract. Rheumatol. 4, 491–498 (2008).
Hermetter, C., Fazekas, F. & Hochmeister, S. Systematic Review: Syndromes, Early Diagnosis, and Treatment in Autoimmune Encephalitis. Front. Neurol. 9, 706 (2018).
Graus, F. et al. A clinical approach to diagnosis of autoimmune encephalitis. Lancet Neurol. 15, 391–404 (2016).
Anti-NMDA receptor encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/anti-nmda-receptor-encephalitis/.
Anti-AMPAR encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/anti-ampar-encephalitis/.
Anti-GABAA receptor encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/anti-gabaa-receptor-encephalitis/.
Anti-GABAB receptor encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/anti-gabab-receptor-encephalitis/.
LGI1-antibody encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/lgi1-antibody-encephalitis/.
CASPR2-antibody encephalitis. Autoimmune Encephalitis Alliance https://aealliance.org/ae-types/caspr2-antibody-encephalitis/.
Malter, M. P., Helmstaedter, C., Urbach, H., Vincent, A. & Bien, C. G. Antibodies to glutamic acid decarboxylase define a form of limbic encephalitis. Ann. Neurol. 67, 470–478 (2010).
Voltz, R. & Eichen, J. A Serologic Marker of Paraneoplastic Limbic and Brain-Stem Encephalitis in Patients with Testicular Cancer. N. Engl. J. Med. (1999).
Graus, F. & Dalmau, J. Paraneoplastic neurological syndromes in the era of immune-checkpoint inhibitors. Nat. Rev. Clin. Oncol. 16, 535–548 (2019).
Lancaster, E. Encephalitis and antibodies to synaptic and neuronal cell surface proteins. (2011).

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Your generous Donations allow IAES to continue our important work and save lives!

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Be a part of the solution by supporting IAES with a donation today.

image - What are intracellular and extracellular antibodies and what do the differences mean for patients with autoimmune encephalitis?

Your Potential Self is Infinite

by Alanna | May 30, 2023 | AE Warrior Personal Stories

May 31, 2023 | By Lisa Lauter. Reposted with permission from Lisa Lauter Journey to Health

A message from IAES Blog Staff:

The entire staff at IAES is very excited to share with all of you a blog published by one of our own members from her own website.

This is an anniversary blog of sorts. Almost 4 years ago to the day IAES published the first blog about Lisa that includes a video clip regarding her AE(LGI1) diagnosis and journey.

Four fast and eventful years have passed. Lisa is doing well along her AE journey, has had her share of ups and downs, has moved, has an active website and has written a book published that is soon to launch. Please feel free to follow Lisa, read her blogs and celebrate her book launch @ https://www.lisalauter.com/

———

Life is Marked by Journeys

What started as a journey north from Texas to hunker down during the pandemic in a little mountain town in British Columbia, evolved into a permanent move back to Canada and the realization of a dream to build our forever home on the edge of a lake, surrounded by mountains. I have to keep pinching myself to believe that’s it’s real, but I wouldn’t be here without supportive friends and family.

The Shady Ladies

I have a group chat with a circle of women who are some of my closest friends. We call ourselves the Shady Ladies – sounds a lot more dodgy than it is. We support each other daily by giving random advice on everything from politics, to fashion, to children, to aging parents, to what the heck should I make for dinner. They are my tribe and they got me through some really dark days. When helping me decide what to write today, one of them said write about “how to cope with multiple projects without losing your mind!” (There may have been a well placed expletive in that sentence). I immediately chirped back, “great idea, but you’re assuming I haven’t lost mine yet!”. Another one said, use a couple of inspirational quotes – the kind you get on tea bags! Hence, today’s blog.

Pace Yourself

If you’ve been following me for a few months, you know that I had a setback recently that threw me for a loop, bringing back symptoms of numbness, tingling and gait changes, and slowing down my cognitive function. It reminded me of the importance of listening to my body and giving it what it needs (sleep, good nutrition, positive mindset, exercise), and learning that sometimes, something’s gotta give.

But here we are! Almost at the finish line and about to move into our new home. The busy-ness isn’t over yet. We still have to move out of the rental we’ve been in for three years, and unpack a truck load worth of stuff and memories that have been in storage all this time. (Pace yourself, Lisa, make space for the daily walks and meditation, eat well and rest.)

Taking Chances

Sometimes you have to take chances to realize dreams. Like my journey to health, we put one step in front of the other, made a ton of lists, and day-by-day checked things off. Sometimes I don’t know how I did it. My camera reel is full of screen shot reminders and my desk and kitchen are plastered with sticky notes and endless lists. Sure, we make mistakes along the way and it’s not always easy, but we try to laugh and remember the big picture. It may sound cliché, but don’t sweat the small stuff. Keep your eye on the prize and have another cup of tea (herbal of course). You never know where you might end up.

Your generous Donations allow IAES to continue our important work and save lives!

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

What is paraneoplastic encephalitis?

How does the immune system respond to cancer?

Why do some people get paraneoplastic encephalitis?

What is the difference between paraneoplastic and non-paraneoplastic AE?

How is paraneoplastic autoimmune encephalitis treated?

References:

Your generous Donations allow IAES to continue our important work and save lives!

Want to help a caregiver whose life is busy, busy, busy? Here’s how!

#1: Bring us a meal.

#2: Come visit us.

#3: Fill our (gas) tanks.

#4: Bring us groceries (treats included).

#5: Update others for us.

And there you have it! Five simple ways to help a caregiver whose life is busy, busy, busy. Pass this on to others who are looking for ways they can help, and let us know if you’d add anything to this list by commenting below.

Your generous Donations allow IAES to continue our important work and save lives!

Learn risk factors, signs of burnout, and how to reduce the danger of caregiver burnout

What is caregiver burnout?

How does caregiver burnout start?

Why is caregiving so exhausting?

What are the risk factors of caregiver burnout?

What are the signs of caregiver burnout?

Measuring caregiver stress and burnout

How to avoid caregiver burnout

1. Make sure you get breaks for yourself

2. Use tools that make sharing updates simpler

3. Use online resources

4. Join a support group

5. Take a self-assessment test regularly

6. Maintain positive relationships with other friends and family

7. Set boundaries

8. Set health goals for yourself, including mental health

9. Set realistic goals for your caregiving and ask for help when you need it

10. Talk to a professional, including a therapist or social worker

11. Be realistic about your loved one’s disease

12. Develop coping strategies that work for you

Self-care is part of caregiving

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What are the known causes and risk factors for AE?

What is the relationship between herpes simplex virus infection and AE?

Concluding Thoughts

References

Your generous Donations allow IAES to continue our important work and save lives!

Introduction

Your PHR Notebook should contain:

Your generous Donations allow IAES to continue our important work and save lives!

Your generous Donations allow IAES to continue our important work and save lives!

Your generous Donations allow IAES to continue our important work and save lives!

Introduction

Your generous Donations allow IAES to continue our important work and save lives!

Introduction

What is the connection between COVID-19 and AE?

How can SARS-CoV-2 infection lead to AE?

What implications might this have for AE research?

Your generous Donations allow IAES to continue our important work and save lives!

Your generous Donations allow IAES to continue our important work and save lives!

Your generous Donations allow IAES to continue our important work and save lives!

Introduction

Your generous Donations allow IAES to continue our important work and save lives!

Your generous Donations allow IAES to continue our important work and save lives!

Introduction

What are intracellular and extracellular antibodies?

Which kinds of AE involve intracellular versus extracellular antibodies?

How are subtypes of AE associated with intracellular antibodies different from subtypes of AE associated with extracellular antibodies?

Your generous Donations allow IAES to continue our important work and save lives!

Life is Marked by Journeys

The Shady Ladies

Pace Yourself

Taking Chances

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