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/
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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 Donationsallow 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.
May 24, 2023 | By Emerson Jane Browne. Reposted with permission from Dancing Upside Down
A message from IAES Blog Staff:
The staff at IAES is excited to bring to you a blog from author Emerson Jane Browne.
Emerson, a traumatic brain injury (TBI) survivor herself, wrote this very insightful blog about a subject we have all wondered about and tried to understand. Why are brain injuries so complex and misunderstood? We hope you enjoy her insight and thoughts as much as we have.
We’ve all heard it. “What the heck? You look fine to me!”
Or “It’s been months! Get over this brain injury stuff! Move on already!”
#1 Blame it on Hollywood!
Movies and television have spread so much misinformation about brain injuries it is practically criminal!!
Hollywood has convinced people that if you have a brain injury you have to look it!You have to drag one foot, or have speech problems, or in some manner “look” disabled.
Nothing could be further from the truth! The majority of brain injuries are not visible at all. You try to express how much you are struggling and the response is “You look great!”
And that is the second reason:
#2 You do look great! You look normal.
People are used to thinking of injury in terms of a broken bone. Subconsciously they are looking for the cast, the bandage . . . the visual evidence of your injury. And you don’t have it so their brains draw the conclusion that you must not be injured.
The interesting thing about this, is it is an automatic processing in their own brain and they are not even aware of it.
For example, we learn very early in our life to equate a glowing red burner or flame on a stove as “Hot”. We learn it so well that it becomes automatic. Each time you see a stove you do not laboriously have to think through or reason out that a glowing burner means hot.
The exact same thing is going on in people’s heads in relation to equating injury with visual cues. Their brains have learned to equate the lack of obvious signs of injury with “non-injured”.
And that leads right into the third reason that brain injuries are so misunderstood:
#3 Brains control everything about us!
Until a person’s brain is injured, we do not realize how much we took our brain for granted.
All the little automatic things – from knowing how to add two numbers to knowing what a paintbrush is for or how to read, or when you get to the store remembering to look at a grocery list you just made . . . All the even more important things like who we are, our own sense of identity, the “me” that you have always counted on from the inside . . . all of that is automatic … until it no longer is.
It is dreadfully hard to explain that to someone who has not experienced it because they really don’t get that our brains are essentially us.
Since you still look like you and sound like you, it is extremely hard for another person to grasp how deeply you feel and know you are no longer the you that you were.
And it is even more difficult for someone to grasp how big of a deal that is, and how lost you feel. If you aren’t you on the inside then who are you? And are you always going to be like this? Are you ever going to get you back?
And that brings us to the fourth reason brain injuries are so misunderstood:
#4 Brains take a very long time to heal and remap!
We are used to the healing we have seen all our life – the cut that heals in a week, the broken bone that heals in six, the bad sprain that heals in ten. Heck, after open-heart surgery most people are able to return to work in about eight weeks!
But think about your brain. It took years to develop! That is what the majority of childhood and young adulthood is about – developing the brain. Then, if you are an adult, you have had even more years of refining your neural network.
The brain is a very complex neural network of connections. The brain strengthens and speeds up the neural pathways we use the most. A brain injury disturbs those delicate intricate pathways and connections.
Healing and regrowing of neurons is slow.
Sadly nerve tissue is some of the slowest growing tissue in our body – likely because of how complex it is. Then, in addition, remapping all the intricate connections takes an even longer time.
So how can I get people to understand my brain injury?
Show them this article.
I am not saying that because I authored this article. It is the reverse. I authored the article specifically so you can show it to friends and family.
Show them the High IQ TBI article – there is a lot of information in there no matter what someone’s IQ.
Communicate
Talk to the people you needto educate. And understand that you do not need to educate everyone. Energy is limited when you have a brain injury. Choose the people who you need to have understand what you are going through.
And choose people who want to understand. You will find that those are the people who really care about you.
Use the term “brain holes”.
I find using the term “brain holes” works well. Yes, it is not a medical term. But naming a problem a “brain hole” is creates a visual image which makes it easier for people to understand.
Use Before and After Examples
Do your best to use examples of how things used to work/feel in comparison to how they now work/feel. Again, using descriptions that people can relate to helps a lot.
For instance, I used the analogy of going from a sleek car with a smooth automatic transmission to suddenly finding myself in a clunker with a standard transmission with a clutch that keeps slipping.
Some Never Will. Let them Go.
I wish I did not have to say that!
But sadly, letting go of friends and even family is one of the biggest heartbreaks of having a TBI.
Some people will not want to try to understand. They are adamant in their beliefs and opinions that you are “faking it to get attention”; that “you need to just get over it”; that you are “not really injured” because you “look fine”. Some people will get tired of trying to understand. They will get impatient with the process. Most people cannot truly grasp or understand how extremely slow and incremental brain healing and remapping is.
They may have supported you and been understanding for a while but somewhere along the line they paste a label on you. And they may never bother to come back around to see if anything changed.
Lastly: Blog
Yes, I am serious. Just do a real simple one. Ask a friend to help you set it up. It is dead-easy on WordPress.com or Google Blogger. (Use a pen name or just your initials because it will free you up to not worry about what you say or any perfection issues. Plus, no one will find it if they google your name.)
Write. Just write. Just write what is going on for you.
Writing will help YOU get a grasp on what is going on, which will then make it easier for you to explain it to others. Writing will also help you be more compassionate with yourself. Interestingly, as you become more compassionate with yourself, others will become more compassionate with you too!
Plus, for those who are truly trying to understand and be supportive, sometimes reading what you have written is the best way to help them grasp what it is like for you on the inside.
Question: What problems are you having being understood? What is working to help others understand?
Your generous Donationsallow 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.
Honoring Mother’s in the Autoimmune Encephalitis Community:
Happy Mother’s Day from International Autoimmune Encephalitis Society!
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How this piece by Erma Bombeck came to me will always be fresh in my memory. There was a synchronicity to it that touched my heart.Our son Matthew is now 32 years old. When he was four, I was fortunate enough to be accepted into a very elite advocacy training program for people with disabilities called Partners in Policymaking. Raising a child with autism is hard. Attending a yearlong program that met for a 3-day weekend each month was challenging for Jim and me as Matthew required 24/7 care and without back-up, that meant Jim would only get a few hours of sleep a night during those periods.
On this weekend, I was to give a presentation. A break was scheduled right afterward. So, people got up to mingle after my presentation. The room was packed with a few hundred people milling about. As I stepped off the stage, I noticed a woman weaving her way through the crowd toward me.She wore a brown hat and was about a foot shorter than my 5’4”, I vividly recall.She came up to me and handed me a piece of paper, smiled, nodded her head to gesture that she was pleased and that she had completed her task, and then wordlessly turned around and wove her way back through the crowd. I remember following that hat with my eyes wondering at her silent retreat.
Then I looked down at the paper she had given me and saw its age. Three of the edges were dusty brown with the remainder a greyish white that told me it had been kept in a book smaller than the size of the page for many years. The paper itself was from an old-fashioned mimeograph machine from the 1960’s. The texture had that slick feel I recalled from my days in elementary school. This dated the paper back more than thirty years. The crisp edges had worn away years ago as they were now softened, curled and brittle enough with cracked tears in the mimeograph paper all a witness to its age.The print was faded with wavy lined sentences from the imprecise printing of the drum of the machine.
This is what it said.
Choosing “Special” Mothers
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 660,000 women will become mothers of a child with a disability.Did you ever wonder how mothers of children with disabilities are chosen?
Somehow, I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation.As he observes, he instructs his angels to make notes in a giant ledger.
“Rudledge, Carrie, twins, Patron Saint…Give her Gerard.He’s used to profanity.”
Finally, he passes a name to an angel and smiles.“Give her a disabled Child.”The angel is curious.“Why this one, God?She’s so happy.”
“Exactly,” smiles God.“Could I give a disabled child to a mother who does not know laughter?That would be cruel.”
“But, has she patience?” asks the angel.
“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair.Once the shock and resentment wear off, she’ll handle it.”
“I watched her today.She has that feeling of self and independence that is so rare and so necessary in a mother.You see, the child I’m going to give her has his own world.She has to make it live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.”
God smiles, “No matter.I can fix that.This one is perfect, she has just enough selfishness.”
The angel gasps.“Selfishness, is that a virtue?”
God nods.“If she can’t separate herself from the child occasionally, she’ll never survive.Yes, here is a woman whom I will bless with a child less than perfect.She doesn’t realize it yet, but she is to be envied.She will never take for granted a spoken word.She will never consider a step ordinary.When her child says ‘Momma’ for the first time, she will be present at a miracle and know it.When she describes what a sunset makes her feel like to her child, she will see it as few people ever see my creations.”
“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above these.She will never be alone.I will be at her side every minute of every day of her life because she is doing my work as surely as she is by my side.”
“And what about her Paton Saint?” asks the angel, his pen poised in midair.
God smiles.“A mirror will suffice.”
By: Erma Bombeck
Your generous Donationsallow 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.
April 26, 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/
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Introduction
Though it can be challenging for doctors to correctly identify and diagnose autoimmune encephalitis (AE), once patients do indeed receive a proper diagnosis there are treatment options that can go a long way in alleviating their symptoms sending them down the road to recovery. A recent study reports that 94% of patients with AE have significant improvement in or complete resolution of symptoms in the first few years after their diagnosis.1,2 One important key to success is promptly starting treatment which both reduces the likelihood of long-term symptoms and prevents relapses.
The job of your body’s immune system is to find and eliminate invaders, like bacteria and viruses, that may be harmful. But in the case of AE, the immune system mistakes the brain as an invader and mounts an attack, leading to inflammation in the brain.3 This inflammation is what causes the symptoms of AE, like hallucinations, memory problems, and seizures. Therefore, all current medical treatments for AE are aimed at decreasing inflammation.4 But even if the ultimate goal is always to reduce brain inflammation, there may be slight variations in the choice of therapies depending on the type of AE and the patient’s unique medical history.
Physicians divide the treatments for AE into first-line and second-line therapies. First-line therapies are treatments that doctors generally prescribe first when a patient is diagnosed with AE. Second-line therapies are treatments that doctors reach for when the first-line therapies didn’t work, or if there are lingering symptoms following initial improvement with first-line therapies.
In this article, we’ll walk through some of the common treatments for AE, why doctors may or may not choose them for a given patient, and how these treatments are thought to reduce AE symptoms.
First-Line Treatments
Steroids
If you or a loved one has been diagnosed with AE, you’re probably familiar with steroids, the medicine that doctors often use first when treating AE. When many people hear the term “steroids,” they think of Barry Bonds or other professional athletes who have used performance-enhancing drugs to get an edge on the competition. But in reality, “steroids” is an umbrella term used to describe a group of chemicals that share a similar shape. Whereas athletes looking to circumvent the rules use steroids called anabolic steroids, doctors treating AE prescribe steroids called glucocorticoids.4
Though doctors can administer glucocorticoids to a patient as a pill or in an IV, we actually make glucocorticoids naturally in our bodies all the time! Our homemade glucocorticoids are essential for a wide range of our bodily functions – from controlling how our body manages sugars and fats, to telling our brain to be alert to our surroundings, to damping down inflamation.5 When prescribing glucocorticoids to patients with AE, doctors try to take advantage of the anti-inflammatory properties of these chemicals.
How exactly do glucocorticoids put the brakes on inflammation? They act quickly and powerfully at the source of inflammation: the cells of your immune system (Figure 1).5 Once they breach the walls of an immune cell, glucocorticoids enter the nucleus, which serves as the control center of a cell. It’s in the nucleus that the cell writes out the instructions for making the proteins that it needs to mount an immune attack. By breaching this nucleus control center, glucocorticoids can override the machinery that the cell uses to write these instructions. This ultimately prevents the immune cells from causing inflammation.
Figure 1. How do glucocorticoids treat AE? Glucocorticoids enter the nucleus of an immune cell, where they override the messages that the cell writes as it tries to make inflammatory proteins.
Unfortunately, glucocorticoids don’t just interfere with the instructions that immune cells use for making inflammatory proteins. They also interfere with the instructions that many other kinds of cells in the body rely on for carrying out their own important functions.6 For example, glucocorticoids can affect the instructions that the cells in your bones use to tell themselves to grow and retain their strength. This can lead to the weakening of your bones, which is a common side effect of glucocorticoids.7 Other side effects include problems with your body’s metabolism, like the redistribution of body fat, as well problems with your skin, like impaired wound healing.6 When patients with AE are first diagnosed, they are often very sick, so very high doses of glucocorticoids may be required to stabilize their condition.8 But as AE symptoms improve, doctors try to slowly reduce the amount of glucocorticoids that a patient is prescribed to prevent some of the harmful and uncomfortable side effects of these powerful medications.
Plasma Exchange (PLEX)
Rather than targeting the inner workings of the immune cells, other treatments for AE target the proteins that are made by the immune cells. One type of protein that immune cells make is called an antibody. Antibodiesselectively stick to invaders and flag them for destruction by other cells in the immune system.9 But in the case of AE, the body accidentally makes antibodies against its own proteins in the brain. When the immune system sees these flags, it mistakenly attacks the healthy brain.
Plasma exchange (PLEX) is a therapy that tries to remove these antibodies that erroneously tell the immune system to attack the brain.10 Antibodies are generally transported in the plasma, which is the liquid-y component of blood. During PLEX therapy, tubes are placed in your veins so that your blood can pass through a machine as it is pumped around your body (Figure 2). This machine acts like a coffee filter, separating the liquid part of your blood (the coffee) from the blood cells (the grounds). Because the liquid part of your blood contains the harmful antibodies, the liquid is discarded and replaced with the plasma of a healthy donor. This healthy plasma is then recombined with your own blood cells that were trapped in the coffee filter, and sent back into your body through another tube.
Figure 2. What happens during plasma exchange (PLEX) therapy? Whole blood is removed from the patient’s vein, then separated into its plasma and red blood cell components. The patient’s plasma is discarded and replaced with donor plasma, which is recombined with the patient’s red blood cells and returned to the patient’s blood stream.
PLEX is generally safe and effective, and it can be especially useful for patients who are particularly vulnerable to the side effects of glucocorticoids.8 However, a major downside of PLEX is that it requires the placement of the tubes that are used to remove and return the blood to the body for the duration of the treatment. These tubes can be a source of infection or bleeding, and can make it logistically challenging for patients to receive PLEX if they aren’t already in the hospital.
Intravenous Immune Globulin (IVIG)
Intravenous immune globulin (IVIG) is another AE treatment that tries to interfere with the antibodies that mistakenly target a patient’s healthy brain in AE. Our blood contains thousands of different antibodies, most of which are designed to target the foreign invaders that we have encountered during our lifetimes. IVIG is the result of taking the blood of thousands of different people, extracting the antibodies from that blood, and then combining the antibodies of all of the different donors.11 This creates a very concentrated slushy of thousands and thousands of antibodies that target all sorts of different proteins. When IVIG is administered to a patient, these antibodies then enter their bloodstream and circulate with the rest of the patient’s blood.
Figure 3. What is intravenous immune globulin (IVIG) therapy? The antibody-containing serum of thousands of donors is combined and then administered to the patient through an IV.
Given that AE is caused by a rogue antibody, it may seem crazy that doctors would give patients many more highly concentrated antibodies to treat AE. But, IVIG is very effective with minimal side effects beyond an increased risk of blood clots in some patients.12 So how does it work? Doctors think that IVIG overwhelms the immune system by flooding it with so many antibodies that the AE-causing antibodies just get swept up in the rush. In other words, the immune system may be so distracted by the onslaught of other antibodies that it forgets about the antibody that was driving the AE symptoms.11
Second-Line Treatments
Rituximab
If the first-line therapies don’t provide sufficient relief for a patient with AE, the most common second-line therapy is a drug called rituximab.8 Rituximab, which was initially designed to treat cancer, is, itself, an antibody.13 But, interestingly, its job is to “tag” the cells in the body’s own immune system that make other antibodies. This causes the body’s immune system to kill its own antibody-producing cells, ultimately halting the production of antibodies.
This means that rituximab can stop the immune system from making the harmful brain-targeting autoantibodies that cause AE symptoms. But Rituximab doesn’t just suppress the production of the AE-causing antibodies – it suppresses the production of all antibodies, including those necessary for fighting infections. This can leave patients vulnerable to bacterial and viral invaders that they would normally be able to fight off. Additionally, rituximab is known to cause other side effects like fevers, fatigue, and nausea.13Nevertheless, rituximab has been shown to be an effective at restoring functioning for patients with AE who need additional treatment on top of first-line therapies.14
Cyclophosphamide
Cyclophosphamide is another cancer drug that has been repurposed as a second-line agent in the treatment of AE.8 Cyclophosphamide works by entering the nucleus of a cell and attaching chemical “decorations” to the cell’s DNA.15 These “decorations” confuse the machinery that a cell uses to duplicate its DNA, which impairs the ability of a cell to replicate itself. Thus, cyclophosphamide can significantly impair the function of cells that rely on frequent replication to do their job, like immune cells.
Cyclophosphamide is very good at killing the immune cells that cause inflammation, which makes it a useful treatment for AE. The side effects of cyclophosphamide, however, can include nausea and hair loss, as well as more dangerous conditions such as bladder injuries and problems with fertility.16 Because of this, cyclophosphamide is generally recommended for patients whose symptoms aren’t eliminated by first-line therapies or rituximab.
Symptomatic Treatment of AE
The immune-targeting therapies for AE aim at eliminating the source of a patient’s symptoms. But oftentimes it can be beneficial to provide patients with additional therapies that can help alleviate the symptoms themselves. For example, the brain inflammation associated with AE can cause patients to experience seizures.17 Seizures are uncontrolled bursts of electrical activity in the brain. Depending on where a seizure starts and spreads, this electrical activity can result in phenomena ranging from the experience of strange sensations to full-body convulsions.18 Many patients with AE may be prescribed anti-seizures medications, which act to quiet down the electrical activity in the brain and decrease the likelihood of the uncontrolled activity of a seizure.
Medical therapies targeting inflammation dramatically reduce symptoms in the majority of patients diagnosed with AE. Some patients, however, will continue to have symptoms even after treatment, and some may be resistant to treatment altogether. We are still early in our research efforts to try to understand how and why people get AE. And as we deepen our understanding of this complex disorder, hopefully we can work towards developing more treatments specifically targeting the underlying causes of AE that are more effective with fewer side effects.
Titulaer, M. J. et al. Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study. The Lancet Neurology12, 157–165 (2013).
Abboud, H. et al. Residual symptoms and long-term outcomes after all-cause autoimmune encephalitis in adults. Journal of the Neurological Sciences434, 120124 (2022).
Dalmau, J. & Rosenfeld, M. R. Paraneoplastic and autoimmune encephalitis.
Lancaster, E. The Diagnosis and Treatment of Autoimmune Encephalitis. J Clin Neurol12, 1–13 (2016).
Ramamoorthy, S. & Cidlowski, J. A. Corticosteroids-Mechanisms of Action in Health and Disease. Rheum Dis Clin North Am42, 15–31 (2016).
Hodgens, A. & Sharman, T. Corticosteroids. in StatPearls (StatPearls Publishing, 2022).
Briot, K. & Roux, C. Glucocorticoid-induced osteoporosis. RMD Open1, e000014 (2015).
Abboud, H. et al. Autoimmune encephalitis: proposed best practice recommendations for diagnosis and acute management. J Neurol Neurosurg Psychiatry92, 757–768 (2021).
Janeway, C. A., Travers, P., Walport, M. & Shlomchik, M. J. Immunobiology. (Garland Science, 2001).
Bobati, S. S. & Naik, K. R. Therapeutic Plasma Exchange – An Emerging Treatment Modality in Patients with Neurologic and Non-Neurologic Diseases. J Clin Diagn Res11, EC35–EC37 (2017).
Lee, S. et al. The safety and efficacy of intravenous immunoglobulin in autoimmune encephalitis. Ann Clin Transl Neurol9, 610–621 (2022).
Hanif, N. & Anwer, F. Rituximab. in StatPearls (StatPearls Publishing, 2022).
Thaler, F. S. et al. Rituximab Treatment and Long-term Outcome of Patients With Autoimmune Encephalitis: Real-world Evidence From the GENERATE Registry. Neurology – Neuroimmunology Neuroinflammation8, (2021).
Ahlmann, M. & Hempel, G. The effect of cyclophosphamide on the immune system: implications for clinical cancer therapy. Cancer Chemother Pharmacol78, 661–671 (2016).
Ogino, M. H. & Tadi, P. Cyclophosphamide. in StatPearls (StatPearls Publishing, 2022).
Davis, R. & Dalmau, J. Autoimmunity, Seizures, and Status Epilepticus. Epilepsia54, 46–49 (2013).
Turek, G. & Skjei, K. Seizure semiology, localization, and the 2017 ILAE seizure classification. Epilepsy & Behavior126, 108455 (2022).
Feyissa, A. M., López Chiriboga, A. S. & Britton, J. W. Antiepileptic drug therapy in patients with autoimmune epilepsy. Neurol Neuroimmunol Neuroinflamm4, e353 (2017).
Your generous Donationsallow 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.
April 12, 2023 | By Emerson Jane Browne. Reposted with permission from Dancing Upside Down
A message from IAES Blog Staff:
The staff at IAES is excited to bring to you a blog from author Emerson Jane Browne.
Emerson, a traumatic brain injury (TBI) survivor herself, wrote this very insightful blog about a subject we have all encountered. Along our own autoimmune encephalitis journeys, as we have changed, so have our friendships. We hope you enjoy her insight and thoughts as much as we have.
Essentially friends of most brain injury survivors fall into four categories with a small amount of overlap:
Friends who knew you before your brain injury;
Close friends who are seeing you through the brain injury and recovery;
Friends who met you or got to know you during the brain injury and recovery;
Friends who are getting to know you after the brain injury and recovery.
NOTE: Though I will use the word “Friends” and “Friend” throughout this article you can add in the word “Family Members” because family members will and do fall into the same categories discussed here.
Before Brain Injury Friendships
Before Friendsare the ones who knew us at work, through our hobbies, in our neighborhood, at our place of worship, etc.
They knew you as a capable, clear thinker. They knew you as a friend who was fun to be around. They knew you as someone who could get things done.
And especially they knew you as a friend who was like them.
“Like Me” Before Friendships
Many of the Before Friends just cannot handle the changes they see in you from the brain injury. Some friends split fast. Others try to hang on but end up drifting away.
Who are those people? Yes they really were your friends, but the basis of the friendship was that you were similar to each other – the like them factor.
We are different now. It is not that these people wish us ill. It is that we are no longer like them so the like them bond is broken.
“True” Before Friendships
And then there are the Before Friends who stick around. They hang with you through thick and thin. Your friendship becomes deeper and richer.
These “true friends” live the adage of “That which doesn’t kill a friendship makes it stronger”.
They will be some of your best supporters over the long haul because they can remind you of who you were and cheer you on (and razz you) to get back there.
Sometimes those “true friends” are the ones who have known you the longest. But often it is surprising who turns out to be one of the caring friends who sticks with you.
Through Brain Injury & Recovery Friendships
The key thing that makes someone a Through Friend is that they are with you; physically with you, seeing you often. Or they are at least on the phone or Skype with you very frequently.
They have to be close enough that they are able to experience and notice the small improvements; to watch you change over time.
“Through friends” may be family. They may be people who knew you pre brain injury. Or they may be people you have met since the brain injury.
These friends and family are close enough to see you grow into your “new self”. They adjust to the incremental changes along with you. They know and understand when you are able to take on new responsibilities.
This is a critical distinction from the During group below. The During Friends know you during the same period as the Through Friends but they are not close enough to really be able to grock the brain injury healing process.
During Brain Injury & Recovery Friendships
During Friends are ones who did not know you pre-brain injury, or at least did not know you well. They get to know you while you are injured and in the recovery period.
The key thing about this group is they are not close enough to you to understand much about your brain injury (or brain injuries in general) in the first place. And they are not close enough to see and realize the changes that are occurring as you heal and recover.
During friends become friends with you thinking “this is the way she/he is”.
I think the like them factor crops up again in the During Friend category. The basis of the friendship is, once again, that there are interests you share in common, or community – like a place of worship or club. They are friends that you see socially. Friends that you may work with in your recovery period.
During Friends can also be attracted to your disability. They can be people who like helping other people. They can be people who feel good about being “more together” than you. You can explain to the brain injury to your During Friends.You can comment about it frequently. But they just will not get it on the level that the Through Friends do. They cannot fully understand that you were very different before the brain injury or that you are incrementally becoming a new you.
After Brain Injury & Recovery Friendships
Brain injury recover is a very slow process. The healing changes are small but cumulative. They build on each other. Recovery takes years!But it happens. The more you stretch and grow, the more your brain remaps.
The “After Recovery Friends” are friends who get to know you after you are well into your recovery. They know you as you are now; the new you.
Friendships at Risk after Brain Injury Recovery
So which of the above friendships is most at risk as you become a new, capable you? As you regain the skill and talent you had pre-injury?
The During Friends!
They became friends with you thinking “this is the way she/he is”. They are not close enough to you to see and celebrate the small changes. And they did not know you pre-accident!
Your changing upsets the balance with During Friends.
Think of a mobile hanging in perfect balance. If you change one item on a mobile all the pieces move and jerk around until a new balance is restored.
The balance in your friendships with your during friends is similar to a mobile. If you change and become someone different from who your during friends expect then you to be upset the whole balance that they have come to count on! People do not like their balance upset so they try to push you back into “your place” in the friendship mobile.
I don’t think they mean to try to keep you small or injured. They just never knew you pre-injury so did not know you could change as much as you have!
And I also do not think that having them be naysayers is necessarily the end of the friendship. But I do think that the friendship will either adjust over time or end.
You cannot play small to please them.
My experience of Before & Through Friendships
In my case the Before Friend category is especially marked because I moved to a different state soon after I had the “main event” brain injury.
Most of my adult, professional life was spent in the Denver/Boulder area of Colorado. I moved to Seattle and suffered an additional brain injury a week after arriving. Though I have stayed in touch with friends from Colorado, they were not in a place to move into the Through Friends category.
Since returning to Washington, I have been graced with developing a few very close friendships and reconnecting with an old friend and deepening our friendship. Plus, recovering from the brain injury has also strengthened my relationship with my two sisters.
These people are my Through Friends. They have seen me through all the years of recovery. They totally get how much I have healed and how much I am back to full-force capability.
It is the reaction of other friends – my During Friends – that caused me to write this article.
New Job and Friends’ Reactions
I recently was hired into an interim position at an executive level. I am very capable of doing the job and extremely excited about it, even though it is only interim.
My Through Friends are rejoicing with me and cheering me on. They know I am ready to make this step.
My Before Friends are happy for me too. Since I moved right after my brain injury, most of my pre-injury friends never knew how bad off my brain was. They knew I could not work for a while, but for me to be hired at an executive level seems normal to them. I was working at that level in Colorado too.
My During Friends are people who I consider good friends. Most of them are social friends I see often. I thought they understood how how hard I have been working at recovery. I thought they would be supportive and excited about my new position.
But that isn’t the case. It is not that they do not wish me well. I think they do.
But their reaction to my new job is more like a “You’ve got to be kidding me” shock response and a “Who do you think you are!?!” look or maybe the look is even “You can’t do that! Why on earth did they hire you?” I also think some of them do not believe it is a real job.
In hindsight, I understand.
Since they did not know me pre-injury, I don’t think they understood how injured I was when they met me. Therefore, they did not look for, nor see the changes that were occurring as I healed. And since they had no idea what I had been like pre-injury, they had no idea who I was working to reclaim.
I told them what was going on for and with me. I thought they had understood. Now I realize that they thought it was ridiculous that I did not have a “regular job” for so long. They totally did not get what I was working on (both healing wise and work wise). I do not feel I have to entirely give up on my During Friends. They are good friends who I enjoy socially. However, I do feel I need to “encapsulate” them.
It is not important to me that they someday see me in a different light. But it is important that their wishing to put me back into a small box is unsuccessful in how I view myself and how I operate in the world. I cannot play small to please them.
Thanks to Nazka @ morguefile.com for the generous sharing of your photos
Your generous Donationsallow 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.
March 29, 2023 | Written by Dr.Robb Wesselingh. Edited by Dr Mastura Monif, Dr Loretta Piccenna, Ms Tiffany Rushen, Ms Amanda Wells (consumer representative) Ms Sasha Ermichina (consumer representative), and Ms. Michelle Mykytowycz.
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A message from IAES Blog Staff:
It is our honor and pleasure to present to all of you an overview of Peripheral monocytes and solublebiomarkers in autoimmune encephalitis. This overview is by the esteemed team at Monash University in Australia & lead by Dr. Mastura Monif, who is a member of IAES’ Medical Advisory Board.
We are proud to be in collaboration with Dr. Monif and her team in the Australian Autoimmune Encephalitis Consortium Project as we work closely with them to best support AE patients, caregivers, and their families.
You can find out more about the Australian Autoimmune Encephalitis Consortium and its efforts to help those with AE and their families via the following link:
Peripheral monocytes and soluble biomarkers in autoimmune encephalitis
Source: R Wesselingh, S Griffith, J Broadley, D Tarlinton, K Buzzard, U Seneviratne, H Butzkueven, TJ O’Brien, M Monif, Peripheral monocytes and soluble biomarkers in autoimmune encephalitis, Journal of Autoimmunity, 2023; 135 https://doi.org/10.1016/j.jaut.2023.103000
Introduction
Autoimmune encephalitis (AE) is a condition in which inflammation occurs in various regions of the brain. In AE a person’s immune system produces antibodies (proteins) that mistakenly targets components of the person’s own neurons (nerve structures). This can result in inflammation and nerve tissue damage. As a result, a person with AE can present with different neurological symptoms including seizures (sudden, uncontrolled electrical disturbances in the brain) and memory problems. There are different types of AE based on which protein the immune system is mistakenly targeting. Two of the most common types of AE are:
NMDAR AE – antibodies targeting a brain protein called N-methyl-D-aspartate receptor or NMDAR and
LGI-1 AE – antibodies targeting a brain protein called leucine-rich, glioma inactivated-1 or LGI-1
While we know antibodies play a key role in the disease, we do not know what changes occur in other parts of the immune system during the course of AE.
The innate immune system is a part of the immune system that acts as a broad first line of defence against foreign invaders to the body like viruses and bacteria. This system can often start or increase inflammation in the body as a protective mechanism. Monocytes are a major type of cell in the innate immune system that drive this response. Monocytes can alert and activate other parts of the immune system through release of small signalling proteins. These small signalling proteins can be released into the blood and tissues and are called cytokines. In AE it is unknown whether the innate immune system or monocytes play a role in the disease.
For this research, we set out to find out answers to following –
Are monocytes in people with AE different than in healthy people?
Is there other evidence of inflammation in the blood of people with AE?
Does the level of inflammation in AE determine disease severity?
Are the inflammatory changes the same in different types of AE?
How we did this work
We recruited 40 people with AE and 28 healthy volunteers who provided blood samples. These blood samples were evaluated in the laboratory for:
Characteristics of the monocytes (whether they show signs of being active and more inflammatory), and
Levels of different cytokines in the blood that may show increased activity of the immune system and increased inflammation
These findings were then compared between people with AE and the healthy volunteers to see if there were any differences. We also compared these findings between people with different types and severities of AE.
What were the interesting things we found
We found that a certain type of monocyte known to play a key role in inflammation in other diseases are increased in number in people with AE compared with healthy volunteers
We also identified that certain cytokines (IL-6, TNF-a) that are important in starting and maintaining inflammation are also increased in people with AE compared with healthy volunteers
These changes were present in both severe and mild AE but were much stronger in people with LGI-1 antibody associated AE.
What do these findings mean?
This research showed that there is ongoing inflammation in the blood of people with AE. Also, monocytes and the innate immune system may play a role in the disease.
The research could help clinicians to –
Identify new treatments that target monocytes and the innate immune system
Use the inflammatory changes identified as a way to diagnose and monitor the disease.
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For more information and resources from Dr. Monif and her group at the Australian Autoimmune Encephalitis Consortium Project, visit this link here. To download a plain language PDF of the paper summarized in this blog, click the button below:
Your generous Donationsallow 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.
The staff at IAES is excited to present the sixth in the blog series by a mighty AE Warrior in her ongoing quest to get all of herself back! Previous posts in Daisy’s journey are linked below:
I am here! I am still fighting every day, and I sometimes feel this Autoimmune Encephalitis(AE) road to recovery is one rough ride! I suppose on many days and in many ways, I could be called Rough Rider Daisy!
This past year has certainly had its share of ups in downs along the road of my AE journey. I have had several relapses that have proved difficult emotionally, mentally, and physically. But I continue to ride this road with positivity!
I have been in and out of hospitals due to seizure activity and AV fistula issues. My seizures are usually preempted by what many of us call an aura. Many AE Warriors can relate to this phenomenon. They can come about quickly or slowly. Sometimes I try to calm my brain and thoughts if I feel an aura but sometimes, they come so quickly, and the seizures come so quickly I have no time or warning. The bottom line with all of this is ongoing anxiety and fear. You never really know when an aura and then a seizure is coming so this can cause fear and anxiety. Somedays I find it difficult to eat, sleep or do simple acts of daily living because of the anxiety. At times I can remember what was happening prior to a seizure and I can remember an aura and sometimes I cannot, but they are all scary.
Many of you may remember the video blog I did for IAES about a year ago about my AV fistula and how helpful having one has been for me. Overall, the fistula has been a godsend and made medication management like getting plasmapheresis much easier. As with most things in life, nothing is perfect, and I have had fistula issues requiring surgery during this past year.
AE can be a rough ride at times. The road can have difficult mountains to climb and beautiful valleys to see. Once again, I will persist and ride this rough road. I will be positive and be Rough Rider Daisy!
Your generous Donationsallow 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.
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/
We all suffer from headaches from time to time. For some a headache is a daily medical issue and they can range from mild and slightly bothersome to migraines that put us in bed for a day or more at a time. This wonderful article by Marissa Maroni helps to shed light on the various types of headaches and the biology behind an issue that we all encounter!
Introduction
We all suffer from headaches from time to time. For some a headache is a daily medical issue and they can range from mild and slightly bothersome to migraines that put us in bed for a day or more at a time. This wonderful article by Marissa Maroni helps to shed light on the various types of headaches and the biology behind an issue that we all encounter!
In the news or on your favorite medical drama you may have been startled to see patients are kept awake during brain surgery. If not, we’ve included an example here! Although it feels wild to witness awake surgeries, they’re possible because the brain itself cannot sense any pain. Despite the lack of pain sensed by the brain, most people do experience head pain at some point in their life, including headaches. The deep, throbbing pain, and sometimes nausea, experienced during a headache can be unbearable. But if brains can’t feel, what causes the pain of a headache and how is this treated?
What kinds of headaches are there?
There are three main types of primary headaches, primary meaning the headache is the issue, rather than a symptom from an underlying condition. The three types of primary headaches are:
Tension-type headaches
Tension-type headaches are the most common primary headache and impact over 25% of people globally1. Tension-type headaches are characterized by mild to moderate head pain that feels like a tightening pressure (imagine hands gripped tightly around your head) that affects both sides of the brain, lasting minutes up to several days2.
Migraines
Migraines effect approximately 14% of the global population1. Migraines are characterized as moderate to severe throbbing pain usually on one side of the brain with pain lasting from several hours to 3 days3. Migraines are usually accompanied by various symptoms such as nausea and light and sound sensitivity4.
Cluster Headaches
Cluster headaches affect approximately 0.4% of people5. Cluster headaches are characterized by excruciating pain on one side of the brain usually surrounding the eye that lasts for minutes up to 3 hours5.
How do they start?
Each of the three primary types of headaches vary in their origin. Rather than extensively unpacking each, let’s focus in on migraines. Prior to a migraine starting a person can experience sound and light sensitivity, mood changes, thirst, and yawning among other symptoms. Scientists have used brain imaging prior to the start of migraines to try and understand why do they start in the first place and what could be causing pre-migraine symptoms?
It is theorized that the brainstem, the stalk of your brain that controls breathing and heart rate among other functions, is the generator of migraines6. A brain imaging study found activity in a subregion of the brainstem was associated with the time until the next migraine starts7. Further, a set of researchers from Germany imaged the brain of a migraine patient for 30 consecutive days to understand what events occur in the brain leading up to a migraine8. They found that before and during a migraine there is altered communication between the brainstem and the hypothalamus, a part of the brain important in controlling sleep, hunger, thirst, and more. Additionally, they found increasing activity in the hypothalamus in the time leading up to a migraine.
Scientists have identified critical brain regions that have altered brain activity prior to a migraine, but can any of this explain pre-migraine symptoms? Researchers hypothesize that the increased activity in the hypothalamus could explain pre-migraine symptoms such as yawning and thirst. Interestingly, migraine patients with light sensitivity have increased activation of the occipital cortex, a brain region responsible for vision perception, in comparison to migraine patients who did not experience light sensitivity9. Although the answer is not precise, scientists have identified altered brain signaling that may prime a brain for a migraine attack and identified specific brain regions that can explain pre-migraine symptoms.
Where does the pain come from?
A main piece to the migraine pain puzzle is a group of nerves that carry pain signals from the face to the brain, referred to as trigeminal ganglion. The trigeminal ganglion connect to the blood vessels surrounding your brain and various parts of the brain including the brainstem, hypothalamus, and thalamus (Figure 1). The thalamus is a place for information to be relayed to your cortex. The activation of trigeminal ganglion lead to a cascade of events that have roles in migraine pain. Let’s explore what events occur and how they contribute to migraine pain.
Figure 1. The trigeminal ganglion, in blue, makes connections to the brainstem, thalamus, and hypothalamus. The thalamus relays information to the cortex.
Sensitization of the brain
During a migraine, it is thought that the trigeminal ganglion become sensitized, meaning they can activate and send pain signals in response to nonpainful stimuli (Figure 2)3. Trigeminal ganglion sensitivity causes throbbing head pain, and pain felt when coughing or bending over during a migraine. Even though you are not doing anything to cause this pain, the trigeminal ganglion is sensitized and sending pain signals anyway! The sensitized trigeminal ganglion lead to the activation and sensitization of the brainstem, and thalamus10. Sensitization of the brainstem and thalamus contribute to allodynia, perception of pain by something not normally painful, like a gentle touch or glasses resting on your nose. Collectively, the sensitization of the trigeminal ganglion, brainstem, and thalamus play a critical role in migraine pain.
Figure 2. Three contributors to migraine pain: sensitization, hyperexcitability, and CGRP release.
Hyperexcitability
Hyperexcitability refers to neurons that are more likely to become active and send signals. General hyperexcitability is seen in individuals with migraines and is hypothesized to contribute to sensitization in the brain as there is more activation in pain signaling regions (Figure 2)3. Brain imaging studies identified that during a migraine the brain is hyper-responsive to sensory information3. This hyper-responsiveness is hypothesized to cause light sensitivity during migraines. Interestingly, when scientists examined shared mutations in the genes of migraine patients, they found that many of the mutated genes were important in neuronal signaling, further suggesting a role for hyperexcitability in migraines11.
Neuropeptide release
The activation of the trigeminal ganglion causes the release of neuropeptides. Neuropeptides are small proteins that cause changes in neuronal signaling (oxytocin is a well-known example of a neuropeptide). An important neuropeptide released after trigeminal ganglion activation is calcitonin-gene related peptide (CGRP). CGRP modulates pains signals, mediates inflammation in the brain, and has cardiovascular, functions among other roles 3,12. There is evidence that CGRP initiates and maintains the sensitization of trigeminal ganglion and is involved in signaling between trigeminal nerves3,13. Further, intravenous administration of CGRP triggers a migraine in migraine patients but not in healthy individuals, suggesting CGRP plays a key role in migraines10. Additionally, CGRP causes blood vessels surrounding the brain to dilate, meaning they expand however, the contribution of blood vessel expansion in migraine pain is disputed14.
What are some treatment for migraines?
Scientists have identified several changes in brain function before and during a migraine that contribute to migraine pain. With all this known, how are migraines treated and how do these treatments work?
A popular and effective treatment for migraines during an active attack are triptans. Triptans act on serotonin receptors. Serotonin is a chemical messenger within our brain responsible for a variety of functions, including mood and digestion. When triptans act on serotonin receptors, they inhibit pain neurotransmission in the trigeminal ganglion, inhibit the release of pain-promoting neuropeptides (like CGRP!), and constrict blood vessels15. Given what we know about headaches, this drug works by halting the cascade of events that occur during a migraine including sensitization, hyperexcitability, and neuropeptide release.
Overall, we’ve uncovered changes in brain signaling that occur before and during a migraine, along with a current treatment. Even though the brain itself cannot feel any pain, it plays a critical role in communicating pain to different parts of your body!
References
Stovner, L. J., Hagen, K., Linde, M., & Steiner, T. J. (2022). The global prevalence of headache: an update, with analysis of the influences of methodological factors on prevalence estimates. The journal of headache and pain, 23(1), 1-17.
Ashina, S., Mitsikostas, D. D., Lee, M. J., Yamani, N., Wang, S. J., Messina, R., … & Lipton, R. B. (2021). Tension-type headache. Nature Reviews Disease Primers, 7(1), 1-21.
Dodick, D. W. (2018). A phase‐by‐phase review of migraine pathophysiology. Headache: the journal of head and face pain, 58, 4-16.
Pescador Ruschel MA, De Jesus O. Migraine Headache. 2022 Jul 6. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan–. PMID: 32809622.
Rossi, P., Whelan, J., Craven, A., & De La Torre, E. R. (2016). What is cluster headache? Fact sheet for patients and their families. A publication to mark Cluster Headache Day 2016. Functional Neurology, 31(3), 181.
Puledda, F., Messina, R., & Goadsby, P. J. (2017). An update on migraine: current understanding and future directions. Journal of neurology, 264(9), 2031-2039.
Stankewitz, A., Aderjan, D., Eippert, F., & May, A. (2011). Trigeminal nociceptive transmission in migraineurs predicts migraine attacks. Journal of Neuroscience, 31(6), 1937-1943.
Schulte, L. H., & May, A. (2016). The migraine generator revisited: continuous scanning of the migraine cycle over 30 days and three spontaneous attacks. Brain, 139(7), 1987-1993.
Karsan, N., & Goadsby, P. J. (2018). Biological insights from the premonitory symptoms of migraine. Nature Reviews Neurology, 14(12), 699-710.
Pietrobon, D., & Moskowitz, M. A. (2013). Pathophysiology of migraine. Annual review of physiology, 75, 365-391.
Burstein, R., Noseda, R., & Borsook, D. (2015). Migraine: multiple processes, complex pathophysiology. Journal of Neuroscience, 35(17), 6619-6629.
Russo, A. F. (2015). Calcitonin gene-related peptide (CGRP): a new target for migraine. Annual review of pharmacology and toxicology, 55, 533.
Iyengar, S., Johnson, K. W., Ossipov, M. H., & Aurora, S. K. (2019). CGRP and the trigeminal system in migraine. Headache: The Journal of Head and Face Pain, 59(5), 659-681.
Buture, A., Gooriah, R., Nimeri, R., & Ahmed, F. (2016). Current understanding on pain mechanism in migraine and cluster headache. Anesthesiology and Pain Medicine, 6(3).
Johnston, M. M., & Rapoport, A. M. (2010). Triptans for the management of migraine. Drugs, 70(12), 1505-1518.
Your generous Donationsallow 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.
February 22, 2023 | byCatrina 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/
As we wind up AE Awareness month 2023, I, for one, am grateful. Grateful for another year of stellar webinars and more information. For all the AE Warriors and our caregivers, we have a very optimistic future. As you have heard before, our road to recovery is no sprint, but it is a marathon we can and will complete. We receive questions all the time regarding the speed at which research proceeds and treatments are approved. And this is tough because although we know this is a marathon, we all truly want things to proceed much quicker. Catrina Hacker, a member of the amazing PNK team has done a wonderful job explaining the process. So, as I have heard said to me what seems like a million times, “trust the process” and we hope you enjoy this blog!
~Fellow Warrior and Editor-in-Chief, Jeri Gore
Introduction
When you or someone you love is diagnosed with a disease like autoimmune encephalitis, the seemingly slow pace at which research progresses can feel frustrating. It’s hard to watch loved ones suffer while wondering why someone hasn’t used their knowledge and resources to find a solution that will make them feel better. In this post I will walk you through why the pace of research on diseases like autoimmune encephalitis can seem slow and what this means for scientific progress toward understanding autoimmune encephalitis.
The human body still has a lot of uncharted territory for biologists
One of the key reasons that biomedical research seems to progress slowly is that there is so much that we still don’t know. Our quest to understand the human body is much like the quest that European explorers once took to uncover the world beyond Western European countries: sometimes clumsy and a centuries-long process. Christopher Columbus’s crew famously stumbled upon North America on their way to India, and some of the earliest world maps were comically inaccurate by today’s standards (Figure 1 left). But over time the explorers made more observations and built new tools that ultimately led to the incredibly accurate and useful world maps that we have today (Figure 1 right).
Figure 1. Left: A world map generated in 1583. A lot of the general organization of the world has been figured out, but we now know that the proportions and specific shapes of individual continents aren’t correct. Right: A modern world map that shows how much our understanding of the organization of the world has grown in the last 400 years with detailed information about elevation across all 7 continents.
Today, biologists are still in the part of the journey where they’re constantly learning new things and updating their maps. Many biological discoveries still feel like the lucky discovery of the Americas by the Nina, Pinta, and Santa Maria. Making things even more difficult, the uncharted territory that biologists want to understand is even more complicated than the stable land masses of continents. Imagine trying to build a map of the world if small chunks of land moved around and interacted with each other in complicated ways. Now imagine that each explorer had to study a slightly different version of the world with small differences that made it unique, but that had the same general layout. That is the size of the challenge that biologists face when studying the human body.
The challenges of mapmaking for biologists go beyond just the fact that components of the maps move and interact. Biologists also have to build maps at different scales and understand how they relate to one another. Consider understanding the brain as an example. Some neuroscientists study how molecules inside individual brain cells work, others study how small groups of cells connect and send signals between each other, others study how large groups of cells send signals across the brain, and still others study how these signals relate to someone’s behavior or symptoms. Even neuroscientists studying things at the same scale often use different tools that make relating their discoveries to someone else’s challenging. As neuroscientists build maps at each of these levels it’s not always obvious how each map relates to the others and connecting the maps can be just as difficult as building them.
Diseases like autoimmune encephalitis can be hard to categorize and diagnose
Understanding how a healthy human body works is hard enough but extending that understanding to figure out how to treat and cure diseases is even more complicated. When it comes to diseases, many different things can go wrong but produce the same symptoms. And oftentimes when one thing goes wrong, it causes a cascade of other things to go wrong as well. This makes it difficult to pinpoint exactly what went wrong first to try to target that for treatment.
One thing this diversity can make difficult is deciding which patients to group together and which to consider separately. Should researchers group patients by their symptoms (e.g., fatigue, motor deficits, headaches) or by biological markers (e.g., testing for things in the blood or cerebrospinal fluid)? * Scientists’ answer to that question is constantly evolving as they learn more about patients with different kinds of autoimmune encephalitis. Until they know enough to separate subgroups of patients, it can be difficult to see through the diversity of symptoms and biological markers toward a clear understanding of exactly what’s going on.
All of these things only become more difficult the rarer a disease is. The more patients with a certain disease that can be studied, the more data points scientists have to work with. This can give them a better sense of the big picture, despite variability between individual patients. This is why the subtypes of autoimmune encephalitis that are most common, like Anti-NMDAR encephalitis, tend to be better understood than rarer subtypes. When there are more diagnosed patients, the disease is easier to study.
*For a deeper dive into this issue, Penn NeuroKnow writer, Margaret Gardner, wrote about how the same problem impacts our ability to study psychiatric disorders in this PNK article.
Rigorous science can’t be rushed
There are also practical components of how research is conducted that contribute to its slow and steady pace. Research needs to be funded and that is typically done through federal grants from organizations like the National Institute of Health (NIH). Grant funding is competitive, and researchers can spend months working on a proposal before submitting a grant. Once submitted, the grant undergoes rigorous review by other scientists. These reviewers are looking to fund science that they think will be successful, so this means that the best proposals aim to take small and manageable steps in our understanding based on past research. After review, many grants are rejected. So, scientists often have to shake off the disappointment, consider the reviewer feedback, and write an updated proposal. And, as it turns out, getting funding is only half the battle. Once a grant is funded and the project can begin, it takes time to train students and lab workers in the skills needed to conduct the research. Sometimes scientists even have to invent new technology to collect or analyze their data because they’re trying to do something that’s never been done before.
Once scientists have their first set of results, these results often lead to new questions that need to be answered. So, scientists must do many follow-up experiments to understand what’s going on before they can feel confident adding their new discovery to the map of the human body. Once they think they know what’s going on, they then need to replicate their results several times to be sure that what they’re studying is generally true and not specific to whatever patient, animal, or dish of cells they ran their first experiment on. After that scientists will spend months putting their results together into a paper which is then reviewed by other scientists who might ask for more experiments or analyses to make their results more convincing. Finally, the paper is published, and that project can be considered complete. A lot of biomedical research is done by first studying cells in a dish, then studying animal models, and then testing treatments in humans. Each step of this process requires scientists to go through the same process of getting funding, verifying their results, and eventually publishing their work.
While all of these steps contribute to the seemingly slow pace of science, they’re also beneficial to scientific progress. Doing many follow-up experiments, replicating results, and incorporating feedback from other scientists means that once a paper is published scientists can be pretty sure that everything in the paper is accurate. This is important because if scientists couldn’t believe most things that are published then they wouldn’t know what foundation to build on when they design new experiments. Such rigorous requirements for publishing research also help to keep patients safe. Ultimately, the goal is that everything we learn from these papers can be used to develop a treatment or a cure for a disease, which means using that knowledge to help human patients. Once scientists know enough to think about possible treatments, scientists and doctors work together to test these treatments in human patients through a process called clinical trials. Doctors and scientists need to be certain of as much as they can so that those treatments are safe.
Concluding Thoughts
While there’s plenty left to learn about autoimmune encephalitis and thinking about that can feel daunting, it’s important to celebrate that we’ve learned a lot already. Successful treatments that work for many people have already been developed, and treatments are only getting better. An increasing understanding of what autoimmune encephalitis is and how to treat it has also led to the creation of research centers, like the Center of Autoimmune Neurology at the University of Pennsylvania, that make researching the disease and connecting patients and doctors easier. Centralized organizations like the International Autoimmune Encephalitis Society also help raise awareness about these issues and facilitate connections between patients, doctors, and researchers that continue to push our understanding forward.
Altogether, there are a lot of reasons to feel optimistic about the future and to trust in the system of slow and steady scientific research that has already delivered trustworthy, safe treatment options.
Your generous Donationsallow 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.
February 8, 2023 | By Jeri Gore, IAES Blog Division Head
As we head into February 2023 and Autoimmune Encephalitis Awareness month 2023, we, the staff at the International Autoimmune Encephalitis Society (IAES), are super excited about how far awareness has come for Autoimmune Encephalitis. There is ever increasing treatment options for AE, ongoing research and clinical trials, increased membership (which speaks to awareness), ongoing recognition, and increased knowledge of more and more types of AE. The staff at IAES are busy as bees with all that is happening in the world of AE and supporting those diagnosed, their families, friends, and medical staff! We are excited and our brains are on fire with what AE Awareness month will bring and offer this year and the positive direction we are headed!
The IAES sponsors AE Awareness month and we have watched in wonder as it has blossomed and grown over the years into a month full of incredible speakers, information, support, and recognition!
The theme for AE Awareness month 2023 is ‘Brain on Fire’. In 2012 Susannah Cahalan released a book based on her AE journey with this name. A film based on this, her memoir, was soon to follow in 2016. Ms. Cahalan has been gracious enough to allow us to use this title for AE Awareness month this year. We are grateful and feel it is a very apt description. AE Awareness on all levels is moving in a positive direction as if on fire. This is terrific news for all AE Warriors, caregivers, medical and support staff, and all of those who will be diagnosed with this disease in the months and years to come.
As we all know, AE can be a difficult and devastating diagnosis. We all have stories to tell about our diagnostic journeys and recoveries. For most, we are fond of saying the recovery to our new normal is in no way a sprint and linear road but rather an arduous bumpy marathon. Like all journeys, there are ups, downs, and everything in between to talk about. At IAES we hear about and help to support folks at every level of their AE disease journey. We hear the good, bad, and ugly. And we hear funny, positive, and uplifting stories as well.
This year, to highlight the positive direction AE awareness is going we would like to talk about the uplifting, funny, incredible, and interesting gifts AE has given (or caused) and some of the very funny things we all have done on our paths towards recovery. Although AE is a devastating diagnosis, there is a gentle and humorous side that is sometimes left unspoken.
For me, personally, the gifts AE has given me may not be as concrete as for others. I have slowed down and appreciate ‘the small’ much more than I used to in my busy forward-looking life. I was always in a rush. I have said many times before that I always and I mean always tried to do way too much and quite possibly did not take the time to do things as well and with as much purpose as I do now. I appreciate those around me much more and I love. I love each day I am given. I love those around me. During my recovery, there were some strange and very funny things that happened. Chalk it up to a healing brain but during the thickest part of treatment and when medication levels were at their peak, sometimes my brain worked in very interesting, strange, and funny ways. One night I woke up, sat up in bed, and said hello and goodbye to my husband in Polish. I have not heard any Polish spoken since long before my grandmother passed in 1969 and I could not even begin to speak it in any way now. Another night I woke up and could recite every address we had ever lived at as well as all my relative’s addresses’ dating back 50 years plus. I cannot do that now. It was crazy and very funny!
There are AE Warriors whose diagnosis has awakened a super creative part of their brain. There is an IAES member who has become an incredible portrait artist. This member had no formal training and prior to the diagnosis had not drawn a thing in their life and now could make a nice tidy living drawing portraits for folks. Another member can now write beautiful and publishable poetry. There is another member whose photographic skills were unknown before AE and now are worthy of magazine covers.This list goes on and on!
All AE warriors, our families, and caregivers could probably write a book on some of the funny things we have done during our recovery journeys. Some may view some of these instances as sad or negative, but you must see the humorous along this marathon of a recovery road for it is in how we handle the difficulties that we are defined. And, simply, sometimes, you just have got to laugh!
One member recalls her son with AE in an acute rehab unit wishing to have French dressing topped with a healthy dash of iced tea on his salads because it tasted amazing. Another recalls stopping at toll booths and being amazed at how kind-hearted folks were giving the tooth booth attendant money just because! Another member recalls telling her family that a school bus driver was coming to take her home and she had never even ridden in a school bus. Most of us while in recovery have short- or long-term memory issues. The brain is amazing but a slow organ to heal. We get very creative in our word choices, and they are sometimes hilarious!! For us, an iron could be called a ‘shirt flattener’. We may call a doorway a ‘get through’. A ‘get louder’ is a remote control. We sometimes put sticky notes up in various colors to help remind us of this, that, and the other thing and cannot remember the color coding of the sticky notes. A clothes dryer could be called a clothes oven. Our brains, with AE, are on fire and as you can see, very creative at times!
As AE Awareness month 2023 progresses, we hope you find wonderful information from the speakers presenting the newest in AE research and treatment. We hope you find support and inspiration whether you be an AE warrior, a caregiver, a loved one, a friend, or anyone wishing to further their knowledge in this exploding field of research and medicine. We hope you see the positive and humorous for although AE is a difficult diagnosis, there is hope and a future for those of us whose brains are on fire!
Your generous Donationsallow 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.
January 25, 2023 | Written by Dr.Hannah Ford. Edited by Dr Mastura Monif, Dr Loretta Piccenna, Ms Sarah Griffith, Ms Tiffany Rushen, Ms Amanda Wells (consumer representative) and Ms Sasha Ermichina (consumer representative).
A message from IAES Blog Staff:
It is our honor and pleasure to present to all of you an overview of typical psychiatric manifestations of autoimmune encephalitis This overview is by the esteemed team at Monash University in Australia & lead by Dr. Mastura Monif, who is a member of IAES’ Medical Advisory Board.
We are proud to be in collaboration with Dr. Monif and her team in the Australian Autoimmune Encephalitis Consortium Project as we work closely with them to best support AE patients, caregivers, and their families.
You can find out more about the Australian Autoimmune Encephalitis Consortium and its efforts to help those with AE and their families via the following link:
Psychiatric Manifestations of Autoimmune Encephalitis
WHY WE DID THIS WORK
Autoimmune encephalitis is a disorder in which antibodies accidentally created by the immune system attack parts of the brain. This can lead to inflammation and nerve damage.
Psychiatric problems are common in autoimmune encephalitis and can imitate mental health conditions, for example psychotic illnesses like schizophrenia. It is important to separate patients with AE from those with mental illness as treatments are very different.
There are different subtypes of AE. Some cases are due to the presence of detectable auto antibodies (a protein targeting the person’s own nerve endings) which is known as ‘sero positive’ AE. In ‘sero negative’ AE, there is no detectable antibody when using currently available techniques for detection.
Within the ‘sero positive’ group are different AE categories depending on the type of antibody. We discuss this further in the next section.
Anti-NMDAR encephalitis
The most common type of AE and typically occurs in young women. Psychiatric problems are the presenting feature in most patients and many are seen first by a psychiatrist. Symptoms start abruptly and progress rapidly over days to weeks.
Common features include psychosis (disruption of person’s thoughts and perceptions that can make it difficult for them to understand what is real versus what is not real). They can present with hallucinations (seeing or hearing things that are not there) and paranoia (false beliefs; for example, believing that people are out there to get you, or having unfounded mistrust of others), agitation, and elevated mood. Occasionally, anti NMDAR encephalitis patients can present with catatonia (complete lack of movement or lack of communication).Almost 90% of patients develop other related neurologic features (including seizures, abnormal movements and speech, and drowsiness) within a month, however some may have only psychiatric problems without neurologic signs.
Anti-LGI1 encephalitis
The second most common AE and typically affects older males.Seizures are usually the first symptom and often occur before patients develop psychiatric and/or memory problems. These seizures can be very brief, i.e. seconds long, and subtle (face and arm twitching known as “faciobrachial dystonic seizures”), but can be very frequent (up to 100s of times per day).
Memory difficulties develop slowly over months and may be accompanied by disinhibition (actions or words that might seem inappropriate or rude or inconsiderate).
They can also present with compulsive behaviors (performing an action persistently repetitively), including excessive eating, cleaning and hoarding.
Psychotic symptoms such as hallucinations and paranoia can occur but are less common, and usually are not an early or major feature.
Anti-CASPR encephalitis
Involves confusion, memory difficulties and ‘slow’ thinking which may be associated with depressed mood. Memory problems can slowly worsen over 12 months or longer in a proportion of patients. These individuals may appear like they have dementia.
Psychotic symptoms such as hallucinations, delusions and paranoia can occur as inflammation of the brain worsens, and usually develop with other neurologic symptoms including seizures, unsteadiness and abnormal jerking and twitching movements.
Anti-AMPAR encephalitis
Typically presents with short-term memory problems, confusion and behavioral changes which get worse over weeks to months.
Psychotic symptoms are variable (20-90% of patients) and may be associated with manic (abnormally elevated or extreme in mood, emotions, energy or activity levels) and aggressive behavior.
Seizures are rare. This type of encephalitis is frequently associated with cancer.
Anti-GABA-A encephalitis
Most commonly presents with seizures.
Memory loss and confusion develop slowly over weeks to months and are associated with personality and behavioral changes in approximately half of patients.
Features of psychosis with hallucinations and paranoia are uncommon but can occur later in severe cases.
Anti-GABA-B encephalitis
Also commonly presents with seizures.
Memory difficulties, confusion and abnormal behavior develop with or after seizures start.
Patients often become depressed and/or anxious at a later stage, usually 1 to 2 years after other symptoms have started.
Memory difficulties are slow to improve and may remain even after treatment.
Psychosis is not a feature.
Anti-DPPX encephalitis
Preceded by diarrhea and weight loss for several months, followed by mild, slowly worsening memory and cognitive difficulties associated with depression and anxiety.
Months or even years later patients develop psychotic features including hallucinations, delusions and aggression with neurologic symptoms such as seizures, limb shaking and jerking.
Anti-mGluR5 encephalitis
A rare type of AE with three major features – psychosis, memory problems and drowsiness.
Patients experience headaches, fevers, weight loss and nausea followed by rapid onset of memory problems, slowed thinking and severe psychiatric symptoms including hallucinations, depression, anxiety and major mood swings.
Many different neurologic symptoms can occur, including seizures, abnormal movements and difficulty using the eyes and face.
Anti-Neurexin-3a encephalitis
The disorder develops quickly over several days with headaches, fevers and nausea, followed by confusion and agitation.
Patients then experience severe neurologic symptoms of drowsiness, abnormal movements, seizures and breathing problems.
Diagnosis and treatment
Features (“red flags”) that may indicate AE as a cause of psychiatric presentation are shown in table 1.
Diagnosis of AE is challenging, and is confirmed by identifying the antibody in the blood or fluid from around the brain and spinal cord (cerebrospinal fluid), however these tests are not always available and may take a long time to return. Other test results that indicate AE may be the cause of psychiatric symptoms include high white cells or inflammation in cerebrospinal fluid, abnormal brain imaging on MRI and abnormal brain electrical activity on EEG (electroencephalogram; refer to our previous summary on EEG here: https://autoimmune-encephalitis.org/using-eeg-nmda
Early treatment of AE can lead to partial or full recovery.
Table 1.
Red Flags for Autoimmune Encephalitis in Psychiatric Presentations
· Preceding physical symptoms such as fever, headache, stomach upset and dizziness
· Seizures
· Neurologic symptoms such as abnormal movements, speech difficulties, clumsiness, weakness and changes in sensation
· “Catatonic” features such as abnormal posturing, repeating another person’s speech (echolalia), lack of movement or erratic movements
· Memory problems
· Psychotic symptoms that start rapidly and/or worsen quickly
What do the findings mean?
Each subtype of AE presents with different psychiatric features. Our research can help clinicians identify patients with psychiatric symptoms due to AE rather than a mental illness.
Early consideration of AE as a differential for psychiatric presentations is important as patients respond well to appropriate treatment (immunotherapy), particularly if given early.
Further studies are needed to continue describing the syndromes associated with each subtype. Fast and accurate testing for the diagnosis of AE is an important area for future research.
—-
For more information and resources from Dr. Monif and her group at the Australian Autoimmune Encephalitis Consortium Project, visit this link here. To download a plain language PDF of the paper summarized in this blog, click the button below:
Your generous Donationsallow 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.
December 28, 2022 | bySophie 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/
——
Introduction
Receiving a diagnosis of autoimmune encephalitis can be a stressful and uncertain time for many patients and their families. And to make it even more confusing, doctors often don’t just give patients a diagnosis of autoimmune encephalitis, but rather anti-NMDAR or anti-Hu or anti-GABAA encephalitis. There are many different types and subtypes of autoimmune encephalitis that can have distinct symptoms, underlying causes, and responses to treatment.1However, the terminology that doctors use to refer to these different subtypes is complex and can sometimes feel like wading into a bowl of alphabet soup! Here, we will try to break down some of the ways that doctors distinguish types of autoimmune encephalitis to help patients and their families make sense of this complicated and rapidly evolving field.
What is autoimmune encephalitis?
Before we break down the different types of autoimmune encephalitis, it is important to understand what autoimmune encephalitis is. What do doctors mean when they use the term autoimmune encephalitis? The suffix -itis can be applied to any part of the body to describe an inflammatory state. So, when -itis is added to the end of the word encephalon (which is the ancient Greek word for inside the head), it means inflammation of the brain. Therefore, encephalitis is a word that describes any sort of inflammation in the brain.
But what exactly is inflammation? What does it mean when a part of the body is inflamed? Inflammation occurs when the body’s immune system is activated.2 Typically, the immune system is activated when there are invaders in the body, such as bacteria or viruses. Once the immune system is alerted to the presence of this invader, it tries to eliminate the invader using a variety of different weapons. Some of the weapons that the immune system uses are called antibodies.3Antibodies act as signals for the immune system so that it knows where to direct its attack. One battalion of the immune system’s cell soldiers makes antibodies that specifically stick to the target. Then, the immune system sends another battalion of cell soldiers to eliminate the target that has been flagged by the antibody.
Even though the immune system’s main job is to mount attacks against invaders like bacteria and viruses, things can go wrong in the fog of biological warfare. Sometimes the immune system accidentally mounts an attack against healthy proteins in a person’s body. When the body’s immune system targets itself, it can result in what is called an autoimmune process (from combining auto-, meaning self, and -immune, as in the immune system).
Now we can put all of these terms together! When the body’s immune system accidentally targets healthy proteins in a person’s brain, resulting in inflammation in the brain, it is called autoimmune encephalitis.4
It is important to note that when the body mounts an autoimmune attack against the brain, it isn’t trying to target everyhealthy protein in the brain. Rather, it’s generally trying to target specific proteins that are found in the brain. When the immune system attacks these proteins, it can damage the proteins and the cells in which they are found. As a result, the type of autoimmune encephalitis and the symptoms associated with that autoimmune encephalitis are based on the type of protein that is targeted for attack by the immune system.5
What part of the brain is affected by autoimmune encephalitis?
Though we are still relatively early in our understanding of how the brain works, we do know that different regions of the brain control different brain functions. For example, some areas of the brain are dedicated to controlling movement, whereas others are dedicated to processing sensory stimuli. One way in which these different regions of the brain are distinct is that their brain cells can contain different proteins. This means that when the immune system mounts an attack against a protein in the brain, this attack is targeted to the regions in the brain where that protein is found. Therefore, the distinct types of autoimmune encephalitis target different regions in the brain and may affect different brain functions.1
Doctors will sometimes describe a patient’s encephalitis based on which part of the brain they suspect is being attacked. Some common terms that you may hear a doctor use to describe autoimmune encephalitis include:
Limbic encephalitis: inflammation of the limbic system. The limbic system includes brain regions such as the hippocampus, amygdala, and hypothalamus that are involved in emotional regulation. People with limbic encephalitis most commonly have changes in their mood and memory, along with seizures starting in the limbic system.6
Brainstem encephalitis: inflammation of the brainstem which is the long stalk at the base of the brain that connects the brain to the spinal cord. The brainstem is the center of many important functions necessary for survival, so people with brainstem encephalitis can have problems ranging from abnormal eye movements to trouble swallowing or breathing.7
Encephalomyelitis: inflammation of the brain plus inflammation of the spinal cord. Sometimes patients with autoimmune encephalitis can also mount an autoimmune attack on their spinal cord. Inflammation in the spinal cord interferes with the sensory and movement signals that are sent between the brain and the rest of the body, which can result in symptoms like weakness, paralysis, numbness, or tingling.8
Is autoimmune encephalitis caused by a tumor?
Another way that doctors distinguish between the types of autoimmune encephalitis is by using the terms paraneoplastic vs. non-paraneoplastic encephalitis. In paraneoplastic autoimmune encephalitides, the reason that the patient’s immune system is attacking their brain is because they have a tumor somewhere in their body.13 A tumor, which is a growth of abnormal cells, can be one of the most common causes of autoimmune encephalitis. This is because the abnormal cells in a tumor can sometimes do strange things to proteins normally found in the brain. For example, tumor cells can place a protein that is normally supposed to be inside of the cell on the outside of the cell, or they can begin to make a brain protein in a different part of the body where it is not normally supposed to be made. This can confuse the immune system, which causes it to attack a normal brain protein that it would otherwise leave alone.9
In contrast to these cases of paraneoplastic encephalitis, non-paraneoplastic autoimmune encephalitis occurs when there is an autoimmune encephalitis but doctors can’t find a tumor anywhere in the person’s body.1 In these cases, what is causing the immune system to all of a sudden decide to attack a healthy protein in the brain is less clear. The cause of cases of non-paraneoplastic autoimmune encephalitis is the subject of ongoing and future research by many doctors and scientists.
Which protein in the brain is the immune system trying to attack?
Perhaps the most specific way in which doctors can distinguish between different types of autoimmune encephalitis is by determining exactly which protein in the brain is being targeted. As discussed above, when the immune system mounts an attack against its target, it makes antibodies to specifically flag this target. These antibodies circulate in the blood and/or the fluid that bathes the brain. Therefore, if doctors can collect these antibodies, they can provide a clue about which protein the immune system is targeting.
As doctors and scientists have identified more antibodies involved in autoimmune encephalitis, they have started to name these types of autoimmune encephalitis after the antibody that is present. For example, one of the most common forms of autoimmune encephalitis is caused by the body mounting an attack against the NMDA receptor, which is a protein found on the surface of many cells in the brain.10 These antibodies against the NMDA receptor are called “anti-NMDA receptor antibodies” so these patients are said to have “anti-NMDA receptor autoimmune encephalitis.” Some of the most common types of autoimmune encephalitis that are named based on the antibody found against their protein target are listed in the table below.
Limbic encephalitis, confusion, abnormal muscle tone
Anti-LGI1
<10%
Limbic encephalitis, seizures
Anti-Hu
>90%
Limbic encephalitis, problems with cognition
Anti-Ma2
>90%
Limbic encephalitis, brainstem encephalitis
Anti-CV2/CRMP5
>90%
Limbic encephalitis
Anti-Amphiphysin
>90%
Limbic encephalitis, widespread paralysis
Table Caption: Different antibodies that are found in patients with autoimmune encephalitis are associated with distinct symptoms and the likelihood that the disease is a result of having a tumor somehwere in the body. Adapted from Davis & Dalmau – Autoimmunity, seizures & status epilepticus (2013).11
In some patients doctors are unable to find an antibody that is known to be associated with autoimmune encephalitis, even if the doctor is pretty sure that the patient’s symptoms are caused by an autoimmune encephalitis. This might be because either the patient’s immune system is notmaking an antibody, or that doctors don’t yet have a laboratory test that is capable of identifying an antibody associated with that patient’s disease. These cases of autoimmune encephalitis are said to be seronegative.12 Doctors and scientists are still looking to identify new proteins and antibodies that are associated with autoimmune encephalitis in hopes of providing a more specific diagnosis for patients who would have previously been thought to have seronegative autoimmune encephalitis.
It is important to remember that autoimmune encephalitis can look different in every patient. For example, one patient may be diagnosed with anti-NMDA encephalitis after she has multiple seizures and is found to have an ovarian tumor. Whereas another patient may be diagnosed with anti-NMDA encephalitis after he has dramatic changes in his personality and memory, but doctors are not able to find a tumor. Nevertheless, breaking down a disease into distinct boxes can help guide doctors in their diagnostic and treatment decisions for an individual patient. And a greater understanding of the subtypes and causes of autoimmune encephalitis may be crucial for developing more targeted and effective treatments for this uniquely challenging disease.
References:
Dalmau, J. & Rosenfeld, M. R. Paraneoplastic and autoimmune encephalitis.
Chen, L. et al. Inflammatory responses and inflammation-associated diseases in organs. Oncotarget9, 7204–7218 (2017).
Janeway, C. A., Travers, P., Walport, M. & Shlomchik, M. J. Immunobiology. (Garland Science, 2001).
Abboud, H. et al. Autoimmune encephalitis: proposed best practice recommendations for diagnosis and acute management. J Neurol Neurosurg Psychiatry92, 757–768 (2021).
Lancaster, E. The Diagnosis and Treatment of Autoimmune Encephalitis. J Clin Neurol12, 1–13 (2016).
Gultekin, S. H. et al. Paraneoplastic limbic encephalitis: neurological symptoms, immunological findings and tumour association in 50 patients. Brain123 ( Pt 7), 1481–1494 (2000).
Tan, I. L. et al. Brainstem encephalitis: etiologies, treatment, and predictors of outcome. J Neurol260, 2312–2319 (2013).
Dalmau, J., Graus, F., Rosenblum, M. K. & Posner, J. B. Anti-Hu–associated paraneoplastic encephalomyelitis/sensory neuronopathy. A clinical study of 71 patients. Medicine (Baltimore)71, 59–72 (1992).
Dalmau, J. & Graus, F. Antibody-Mediated Encephalitis. N Engl J Med378, 840–851 (2018).
Barry, H., Byrne, S., Barrett, E., Murphy, K. C. & Cotter, D. R. Anti-N-methyl-d-aspartate receptor encephalitis: review of clinical presentation, diagnosis and treatment. BJPsych Bull39, 19–23 (2015).
Davis, R. & Dalmau, J. Autoimmunity, Seizures, and Status Epilepticus. Epilepsia54, 46–49 (2013).
Lee, W. J. et al. Seronegative autoimmune encephalitis: clinical characteristics and factors associated with outcomes. Brain awac166 (2022) doi:10.1093/brain/awac166.
Rees, J H. “Paraneoplastic Syndromes: When to Suspect, How to Confirm, and How to Manage.” Journal of Neurology, Neurosurgery & Psychiatry 75, (June 1, 2004): ii43–50. https://doi.org/10.1136/jnnp.2004.040378.
Your generous Donationsallow 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.
My letter to Santa. ATTENTION: YULETIDE BUREAU WISH DEPARTMENT
Dear Santa, As you know, I have given great thought to my Christmas wish this year. I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.
Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)
Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.
Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying or judging. I can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!
I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa. We are talking TOUGH challenge here.
Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.
Sorry, attention span problems, back to my favor. But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.
Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could! Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.
Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything. Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)
I am having a problem with worry for my future. I have now faced FEAR. I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear.
This brings me to that favor I mentioned. My Christmas Wish. Gosh, Santa, I need your help.
By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late. Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year… But, you know that too… Sorry….. What was I going to say? Oh, right! My Christmas Wish:)
You’ll find an envelope by your nighttime snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish.
And when you take your leave, by the way, I LOVE that time suspension magic you do- very cool!
When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were? By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.
My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….
P.S. Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.
Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) Pleasant trip and God speed. Best Wishes, Tabitha
(Originally written December 17, 2014)
IAES invites you to spread awareness of Autoimmune Encephalitis by sharing this delightful musical spoof utilizing the classic holiday music from ‘Rudolf the Red-Nosed Reindeer’. Learn who identified the most common type of autoimmune encephalitis of them all and where that magical moment occurred.
Your generous Donations allow IAES to continue our important work and save lives!
International Autoimmune Encephalitis Society (IAES) is a Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.
Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premier organization leading in these vital roles.
Become an Advocate by sharing your story. It may result in an 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.
December 14, 2022 | by Sarah Watts. Illustration by Jeannie Phan. Republished with permission from Brain & Life Magazine
A message from IAES Blog staff:
The holidays are a busy time for everyone. For those of us with neurological issues and for those that care for us, this busyness may seem overwhelming at times. In 2021 Brain & Life magazine published an article that may make one part of the holiday season a small bit easier and much more fun.They published an article that provides a fun and useful list of gifts for those with neurological issues. It is our sincere hope you find this as helpful as we have!
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Thoughtful Holiday Gifts for People with Neurologic Conditions
Our guide makes gift-giving a cinch—and fun.
If you ask John Andrejack, a 53-year-old college professor from New York City, what he wants for the holidays, a massage is at the top of his list. It’s the kind of gift that’s personal, he says, but also practical: It helps with the muscle aches that are a symptom of hisParkinson’s disease.
Diagnosed at the age of 47, Andrejack has had several holiday seasons when friends and family wanted to give him something both meaningful to his personality and appropriate for his condition, but it’s not easy. This is mainly, Andrejack says, because Parkinson’s disease and other neurologic conditions such asstroke,traumatic brain injury,tremor,amyotrophic lateral sclerosis(ALS), andmultiple sclerosis(MS) vary so much from person to person.
“What might be really useful for someone might not necessarily be wanted by someone else,” says Erin Cecchi, MSW, LCSW, senior program coordinator and clinical social worker at Northwestern University’s Parkinson’s Disease and Movement Disorders Center in Chicago.
But the possibilities are expanding. As the number of Americans living with a neurologic disease increases (that number is now 25 million, according to a report inAnnals of Neurology), companies are responding with suitable products and services.
Here are some gift ideas from people who know: neurologists on the editorial board ofBrain & Life, physical and occupational therapists, and patients like Andrejack.
Gifts for the Home
Satin sheets. Soft, slippery sheets make it easier to move around in and get out of bed. (amazon.com, bedbathandbeyond.com, sheex.com, target.com, thecompanystore.com, walmart.com)
Weighted blankets. These can deflect anxiety and stress. “The heavy feeling of a weighted blanket can be calming and help a person feel safe and comfortable,” says Cecchi. (amazon.com, gravityblankets.com, sensacalm.com, sleepnumber.com, walmart.com, yaasa.com)
Heated blankets or vests. “Many patients with neurologic conditions have trouble regulating their temperature,” says JoEllyn Fox, DPT, lead therapist at the Dan Aaron Parkinson’s Rehabilitation Center at the Perelman School of Medicine in Philadelphia. This is especially true for people with MS, ALS, and Parkinson’s disease. Blankets and vests help stabilize body temperature. (amazon.com, ororowear.com, walmart.com)
Support wedges. “Typically, people with Parkinson’s disease have a stooped or forward-flex posture that puts strain on their muscles,” says Chelsea Richardson, PT, DPT, a board-certified neurologic clinical specialist and clinical director at Re+active PT in Los Angeles. Support wedges, roller pillows, and foam leg supports can relieve the aches and pains. “I definitely recommend them for my patients with lower back pain.” (amazon.com, helixsleep.com)
Blue light glasses. “Light sensitivity is common after a concussion or stroke,” says Richardson. This is true for many types of light and frequencies, including sunlight and computer screens. By blocking out blue light, the specialized glasses can alleviate sensitivity and headaches. (eyebuydirect.com, felixgray.com, warbyparker.com)
Rocking knives. “Specialized equipment for the kitchen is always a welcome gift for people with neurologic conditions who love to cook and bake,” says Fox. The rocking knife is designed to cut food with a back-and-forth motion and is perfect for those who can’t use a knife and fork because of tremor or muscle fatigue. A pizza cutter is another option. (amazon.com)
Immersion blenders. They’re lighter than traditional blenders and require only one hand to operate, so they’re good for those with impaired dexterity. (kohls.com, target.com, walmart.com)
Weighted utensils and adaptive gadgets. Many kitchen utensils are available in heavier-than-normal models for people with dexterity problems. They can help offset tremors associated with Parkinson’s, Richardson says. Adaptive versions of gadgets like electric can openers, vegetable choppers, and apple slicers get the job done with just one hand, which could be useful for a person with a fine motor deficit. (amazon.com, rehabmart.com, rehab-store.com, specialsupplies.com, thewrightstuff.com)
Adaptive dishes. Bowls and plates with feet that grip the surface and shapes that make it easier to scoop food are helpful for stroke survivors and others who may have weakness on one side. (amazon.com, ncmedical.com)
Silicone place mats and stabilized cutting boards. Place mats prevent plates from slipping, and stable cutting boards make chopping vegetables safer and easier. (amazon.com)
The Staybowlizer. A brightly colored ring-shaped accessory made of silicone, the Staybowlizer holds bowls firmly in place so there’s less tipping or spillage while preparing meals. “From an occupational therapy standpoint, these compensate for extra movement like tremor,” Fox says. (amazon.com, staybowlizer.com)
Gifts For Daily Living
Electric Toothbrushes Or Shavers. Since these devices do most of the work, they can be helpful for people with tremor or impaired dexterity. An electric shaver can prevent cuts. (amazon.com)
Squatty Potty. Constipation is often one of the earliest nonmotor symptoms for people with Parkinson’s disease, says Richardson. The Squatty Potty footstool positions the body optimally, and it comes in newer styles made of Lucite or bamboo. (squattypotty.com)
Raised toilet seats. “If you have muscle weakness, it may be difficult to stand up from lower surfaces, such as toilets,” Richardson says. “A raised toilet seat promotes independence by allowing people to get on and off the toilet more easily.” (walgreens.com)
Slip-on shoes and accessories. Brands like Kizik, Zeba, and Billy Footwear offer shoes that are easy to put on—and stylish. A long shoehorn can help with lace-up shoes, and a sock assist makes putting on socks a lot easier. (billyfootwear.com, kizik.com, zebashoes.com)
Compression socks. These snug yet stretchy items can ease neuropathy, reduce temperature sensitivity, and prevent muscle cramping, says Cecchi. (affordablecompressionsocks.com, bombas.com)
Adaptive clothing. Tommy Hilfiger, MagnaReady, and Silverts are some brands that make clothing with Velcro closures instead of buttons. “And it really looks good now,” Fox says. (magnaready.com, silverts.com, usa.tommy.com)
Signature stamps. Signing important documents can be time-consuming and frustrating for people with impaired fine motor skills. Signature stamps can solve the problem. (simplystamps.com, vistaprint.com)
Writing tablets. Digital notepads are made just for writing (or drawing), not internet and app use, and they easily erase messages. That makes them ideal for people who have trouble speaking but can still write, says Cecchi, who uses one in her clinic. (mobiscribe.com, myboogieboard.com, target.com, walmart.com)
Picture dictionaries. Many stroke survivors experience aphasia, which impairs all aspects of language—speaking, listening, reading, and writing—and renders communication almost impossible. Picture dictionaries such as This, Please!: The Tourist Picture Dictionary and Point It: Traveller’s Language Kit are invaluable resources, allowing people to point to what they’re trying to say rather than verbalize it. (amazon.com)
Dictation software. For those who can speak but have difficulty writing, consider this electronic solution. (livevox.com, dolbeyspeech.com, talkatoo.com)
Writing implements. Weighted pens make writing easier for those with tremors. Writing grips, lined sticky notes, and wrist braces also improve the ability to write. (rehab-store.com, walmart.com)
Voice-controlled devices. An electronic “virtual assistant” that responds to spoken instructions to play music or turn on and off lights may help with communication and voice modulation, Fox says. (amazon.com)
Gifts for Getting Around
Canes. For people with mild walking impairments, a personalized or attention-grabbing cane might be a fun gift, especially if the recipient associates it with more independence or a higher quality of life, says Fox. “It’s important to connect the cane with an added benefit such as getting out to visit a friend.” Some canes even have a built-in GPS navigation system, which can be very handy, says Andrejack. (walmart.com, amazon.com, myrmsstore.com)
Lift chairs and transport chairs and boards. These are vital but expensive, so consider offering to share some of the cost. But first check with the recipient to see if these items are covered by insurance through durable medical equipment benefits. If recipients already have these devices, make them more personal and fun with light-up wheels, stickers, or monograms for chairs. (amazon.com, sitnstand.com, walmart.com)
Reachers and grabbers. These devices help access items in hard-to-reach areas, especially for people in wheelchairs or at risk for falling. (amazon.com, carewell.com, myrmsstore.com, walmart.com)
Car-assist handles. These small, portable levers wedge into the latches of car door frames, making it easier to get in and out of vehicles. (amazon.com, mdmaxx.com, medicalsupplydepot.com)
Car handlebars and car caddies. These are additional devices that help people get into and out of cars with less effort. (amazon.com, braunability.com, homedepot.com, mdmaxx.com, medmart.com, mobilityworks.com)
Seat lifts. Combine the gift of a meal at the recipient’s favorite restaurant with a seat lift for the person’s car, says Fox. “Recipients may enjoy the prospect of a dinner more, knowing they can transfer from car to restaurant easily,” she says. (braunability.com, lifewaymobility.com, sitnstand.com)
Gifts for Fitness
Personal trainers. If going to the gym is not feasible, book a session with a personal trainer who has experience working with clients who have the same condition as the person to whom you’re giving this gift. Reach out to the recipient’s doctor or physical therapist, if possible, for trainer recommendations.
Gym memberships. Exercise is crucial for people with neurologic disorders, says Richardson, since it increases dopamine, a neurochemical that affects movement, mood, and coordination. (A loss of dopamine can make exercise difficult due to apathy, muscle weakness, fatigue, or poor coordination.) A gym membership can be motivating, especially when the gift giver commits to going too!
Trekking poles. “Walking sticks improve stability and posture,” says Richardson. They also can increase arm swing and stride length in people with Parkinson’s disease. (kuiu.com, llbean.com, rei.com)
Fitness trackers. Being stuck at home during the pandemic worsened symptoms for many of Fox’s patients. A fitness tracker can motivate people to move, indoors and out. Fox suggests including a homemade coupon with the tracker that can be redeemed for setting up the tracker. (apple.com, bestbuy.com, koretrakpro.io, target.com, walmart.com)
Weights. A set of dumbbells or a floor or hand cycle allows people to exercise at home, which is important for immunocompromised and other vulnerable patients who still may be avoiding the gym, says Fox. Just be sure the recipient doesn’t have a condition that precludes using the equipment, she says. (amazon.com, dickssportinggoods.com, walmart.com)
Gifts Outside the Box
Electronic or audiobooks. E-books are lighter and more portable than traditional books, and audiobooks are ideal for people with vision problems. (audible.com, ebooks.com)
Digital music services. “Music is so important, for everything from movement to mood,” says Fox. Creating personalized playlists or giving a gift subscription to a monthly music streaming service like Spotify encourages exercise, boosts mood, and triggers memories. (amazon.com, apple.com, idagio.com, pandora.com, spotify.com)
Photographs. “Framed pictures are thoughtful, but for people whose fine motor skills have declined, they can be breaking hazards,” says Cecchi. “Photo albums work much better, or even individual prints of special photos that evoke fond memories.” Creative gift givers could design a digital or printed scrapbook. (mixbook.com, shutterfly.com, snapfish.com)
Homemade coupons. Create fun coupons with promises to clean out closets, take out the trash, mow the lawn, or cook a meal.
Days of beauty. A certificate for a haircut and style may be a welcome gift, especially if you help make the appointment and drive the person to the salon.
Meals. Bring over takeout or homemade food for two to save your gift recipient the stress of cooking, and to provide company. Cecchi says, “This can be as simple as just bringing someone a milkshake,” which is both delicious and easy to swallow.
Mindfulness aids. Meditation and mindfulness can ease anxiety and depression, says Fox. To get friends and loved ones started, consider app subscriptions, adult coloring books, or mindfulness workbooks.
Biofeedback tools. For Richardson’s patients who have autonomic dysfunction—the body can’t regulate body functions like blood pressure, heart rate, and digestion—she uses a wearable biofeedback device called Lief that makes patients aware of erratic nervous system responses and teaches them corrective breathing exercises. It requires a monthly subscription, and users can return it when they’re done. (getlief.com)
Think Twice
You don’t want to give a gift that’s impractical or inappropriate, no matter who the recipient is. If it’s a person with a neurologic condition, certain gifts may be awkward, best shared privately, or better to be coordinated with the recipient’s physician.
Food treats. A fruit basket or a box of candy is lovely—unless the recipient has problems with swallowing, as can happen with Parkinson’s disease and amyotrophic lateral sclerosis.
Medication organizers. Items like dispensers, organizers, or pill caddies might feel impersonal or too condition-focused, says John Andrejack, a professor in New York City who has Parkinson’s disease.
Outings. Without fully understanding the recipient’s abilities and limitations, you might choose an event or excursion that could be stressful. Talk with the person and make plans together if a trip or a concert seems like a good gift idea, says JoEllyn Fox, DPT, lead therapist at the Dan Aaron Parkinson’s Rehabilitation Center in Philadelphia.
Portable urinals. “These can be so useful for people with Parkinson’s, but I wouldn’t want to get one for Christmas,” says Andrejack. That would make me extremely uncomfortable.”
Walkers or rollators. “These gifts can be a bit like giving your mom a vacuum for Christmas,” says Fox. They can be practical, but not personal or exciting. And even though retailers like Amazon and Walmart stock them, many of these devices are better purchased through a doctor’s or physical therapist’s office, where they can be fitted properly.
Your generous Donationsallow 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.
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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The holy grail! The million-dollar question! How long will it take to get rid of AE, to heal from AE…when will we feel and act ‘normal’ again? Why do we not understand more of the healing process’ from a diagnosis of autoimmune encephalitis?
Kara McGaughey and the team at PennNeuroKnow help us further understand just how complex and individual our brains are!
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Introduction
If you break a bone, your expectations about the healing process and how long it might last will vary depending on the nature and severity of the fracture. For example, a small fracture will come with a completely different timeline for recovery than a compound fracture (where the force of the break causes the bone to pierce through the skin).
Just like broken bones, no two cases of brain injury are exactly the same and the timeline of the healing process depends on the nature and severity of the injury. As such, when we consider healing from brain injuries, like autoimmune encephalitis (AE), the diversity of diagnoses and symptoms leads to a diversity of recovery trajectories, which can make navigating the healing process a confusing and isolating experience. Here, we dive into this diversity, exploring what healing from AE looks like, why the process takes so long, and why it varies so much.
How does the brain heal from autoimmune encephalitis?
“I felt like a robot controlling my body for the first time – speech, thought and movement all under shaky manual control. I felt like my brain was being reacquainted with my body.”
— Alexandrine Lawrie on AE recovery1
Autoimmune encephalitis (AE) is a collection of related conditions in which the body’s immune system produces antibodies that mistakenly attack the brain, causing inflammation. In order to begin the healing process, treatment is needed to shut down the overactive immune system, remove the antibodies mounting the attack, and reduce brain swelling.2-3 To accomplish this, doctors typically rely on a handful of treatments options:
Corticosteroids to reduce brain inflammation/swelling and immune system activity.
Blood plasma exchange to remove and replace the harmful antibodies circulating in the blood (which can find their way into the brain).
Intravenous immunoglobulin (IVIG), which includes helpful antibodies isolated from the blood plasma of thousands of healthy donors.
Immunosuppressant medications(like Cyclophosphamide and Rituximab) to directly suppress the immune system, if necessary.2-4
Steroids, blood plasma exchange, intravenous immunoglobulin, or a combination of the three represent the most common defense against AE.2,4 These first-line treatments can be helpful for stopping the immune system’s attack on brain tissue and reducing inflammation. Corticosteroids, for example, reduce brain swelling by preventing the production of inflammatory proteins by immune cells. These steroids also help to restore the integrity of the blood-brain barrier, a protective lining that shields the brain from inflammatory cells and harmful antibodies that may be circulating in the bloodstream.5 In AE the blood-brain barrier can spring leaks, which allows antibodies from the bloodstream to penetrate the brain and wreak havoc.6 Closing up any leaks in the barrier that formed as a result of AE disease progression is a critical first step in the healing process.
However, recovery from AE can take time and is often not an abrupt rise and fall of symptoms (Figure 1, left). Instead, while many people do respond to available treatment options, the initial period of healing usually falls short of complete, giving way to a longer and more complicated recovery trajectory (Figure 1, center). For example, first-line therapies fail to resolve symptoms in about 50% of patients with AE, which means that additional and prolonged treatments are often required to suppress the immune system and give the brain an opportunity to repair and recover.4 In these cases, doctors turn to second-line therapies, like immunosuppressants. While having steroids on board promotes brain healing by stopping the leakage of antibodies from the bloodstream into the brain, immunosuppressants, like Rituximab, go after the cells that make the antibodies in the first place.5 When given long-term, Rituximab can be effective at reducing symptoms and keeping AE in remission.2,4
Figure 1: Rather than a simple rise in symptoms that is quickly attenuated with treatment (black line, left), the timeline of healing from AE often comes with a series of ups and downs (green line, center). The height of these highs and lows depends on many factors, such as the specific AE diagnosis (i.e., the type of antibody causing the attack and the brain areas involved) and the time between symptom onset and treatment. As such, each AE patient’s path to recovery looks different (right).
While therapies, like Rituximab, can be incredibly effective, outcomes are still highly variable. Because no two cases of AE are exactly the same, no two recovery trajectories are either (Figure 1, right). Both treatment options and outcomes often depend on details of the AE diagnosis, such as the type of antibody involved. For example, a recent study of 358 patients with AE demonstrated that people with anti-NMDAR antibodies, LGI1 antibodies, and CASPR2 antibodies respond differently to Rituximab immunotherapy.7 These groups of patients with AE caused by different antibodies not only reported differences in symptom relief, but they ultimately reached different levels of day-to-day independence. Nevertheless, regardless of treatment approach and AE diagnosis, early and aggressive therapy is consistently associated with better outcomes. This means that as diagnostic tools and treatments improve, more people with AE have the opportunity to heal.2
How long does the process of healing from autoimmune encephalitis take?
“Good, bad, up, down, round and round;
I feel as though I’m on a merry-go-round.
Full of uncertainty if it will ever stop spinning;
Full of frustration as I remain on my couch sitting.
It’s going to be alright; it’s going to be okay; I will continue the fight day to day.
I will keep the hope and learn to cope;
I will continue my way up this slippery slope with hopes of support and love of some sort.”
— Anonymous on living with AE8
Since people tend to differ in their response to AE treatments, they tend to recover at different paces. For some, AE symptoms decline steadily with continued immunotherapy, leading to recovery within a couple months. Others experience persistent relapses, leading to a recovery timeline on the order of years (Figure 1, right). Research studies show that most patients continue to improve 18 months to 2 years after starting treatment, but there are some people with AE who experience ongoing and life-changing symptoms.9
Similar to how some types of AE respond better or worse to particular treatments, AE diagnosis also affects the timeline of recovery and the risk of recurrence. A recent study followed up with AE patients 3, 6, and 12 months after starting treatment, assessing and comparing their symptoms using a measure of the degree of disability or dependence. Researchers and clinicians found that after three months, two thirds of patients with anti-LGI1 or CASPR2 antibodies recovered to “slight disability” compared to only 30% of patients with anti-NMDAR or other antibody-based AE.10
This persistence of symptoms among patients with anti-NMDAR vs. anti-LGI1 or CASPR2 AE may come from the fact that different AE antibodies carry different risks for relapse. For example, the risk of relapse within two years for anti-NMDAR AE is 12%.9 There are other AE diagnoses, like anti-AMPAR AE, where the relapse rate is even higher, pushing 50-60%.11 This increased risk of relapse is thought to stem from the fact that patients with anti-AMPAR AE often have psychiatric and memory dysfunction that make them less likely to keep up with medications. However, while it may be more prevalent for some types of AE than others, relapse is not a given. These same studies show that patients who receive (and continue) with first-line treatments have a lower risk of recurrence relative to untreated patients.11 Risk of relapse is further decreased in patients who have been given both first- and second-line therapies.5,9 This clear payoff of continued treatment suggests that as we continue to make improvements to AE therapies, there is potential for the percentage of patients reaching recovery to continue to increase.
All in all, vast differences in AE diagnoses and symptoms lead to lots of variability in treatment options, the healing process, and recovery timelines. This diversity of AE trajectories makes setting expectations for the healing process especially difficult. It also highlights the resilience of AE patients, their families, and their support systems who tirelessly endure and advocate despite prolonged uncertainty.
“A dear lady friend of mine (with the same illness) said this great quote that I reflect on frequently:
‘Not every day is good, but there is good in every day.’
And that has been absolutely true.
Each day presents itself with its own challenges and even though I don’t know what the future holds,
I am most calm when I focus on the good one day at a time.
–Amy on her AE journey12
Work Cited:
Lawrie, A. My experience with autoimmune encephalitis: A year of recovery. The Health Policy Partnership (2022). Available at: https://www.healthpolicypartnership.com/my-experience-with-autoimmune-encephalitis-a-year-of-recovery/. (Accessed: 25th October 2022).
Dinoto, A., Ferrari, S. & Mariotto, S. Treatment options in refractory autoimmune encephalitis. CNS Drugs36, 919–931 (2022).
Abboud, H. et al. Autoimmune encephalitis: Proposed best practice recommendations for diagnosis and Acute Management.Journal of Neurology, Neurosurgery, and Psychiatry92, 757–768 (2021).
Dalmau, J. & Rosenfeld, M. R. Autoimmune encephalitis update. Neuro-Oncology16, 771–778 (2014).
Shin, Y.-W. et al. Treatment strategies for autoimmune encephalitis. Therapeutic Advances in Neurological Disorders11, 1–19 (2018).
Platt, M. P., Agalliu, D. & Cutforth, T. Hello from the other side: How autoantibodies circumvent the blood–brain barrier in autoimmune encephalitis. Frontiers in Immunology8, 442 (2017).
Thaler, F. S. et al. Rituximab treatment and long-term outcome of patients with autoimmune encephalitis. Neurology: Neuroimmunology and Neuroinflammation8, (2021).
Fitch, A. AE Warrior Personal Stories Archives. Autoimmune Encephalitis (2022). Available at: https://autoimmune-encephalitis.org/category/ae-warrior-personal-stories/. (Accessed: 25th October 2022).
Titulaer, M. J. et al. Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: An observational cohort study. Lancet Neurology12, 157–165 (2013).
Seifert-Held, T. et al. Functional recovery in autoimmune encephalitis: A prospective observational study. Frontiers in Immunology12, 641106 (2021).
Leypoldt, F., Wandinger, K.-P., Bien, C. G. & Dalmau, J. Autoimmune encephalitis. European Neurological Review8, 31–37 (2013).
Amy. Amy’s story. The Encephalitis Society (2021). Available at: https://www.encephalitis.info/amys-story. (Accessed: 25th October 2022).
Your generous Donationsallow 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.
Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society cannot provide medical advice.
International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.
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