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Moving Forward: A Poem

Moving Forward: A Poem

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March 27, 2024 | by Christopher (Topher) McLaughlin

 

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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.

 

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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.   Trivia Playing cards 3 FB 500x419 - Moving Forward: A Poem 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.   AE Warrior Store 300x200 - Moving Forward: A Poem

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

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The Cat in the Hat on Autoimmune Encephalitis

The Cat in the Hat on Autoimmune Encephalitis

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March 6, 2024 | by Tabitha Orth, IAES President and Founder

Dr. Know on Autoimmune Encephalitis

You have brains in your head, you most certainly do

100 billion neurons are there, give or take one or two.

One rainy day when the weather was shoddy,

My immune system rebelled and made a strange antibody.

As quick as a shot from my head to my toes, my thinking and feeling went haywire to ‘anything goes’.

My seeing, my walking, my talking, MY WORD,

what I heard, what I saw, what I thought was absurd!

That antibody doubled, it tri-multi-zooppled!

Making an army of friends ~ all uninvited~ who hitched rides on my neurons getting them over excited!

Zipping this way and that way around in my brain

those antibodies zapped me causing terrible pain.

My poor brain it was not feeling well. My poor brain felt insane and it started to swell!

To the Doctor I went (for my thinking was spent).

I got this test and that test and a Brain selfie too

As my Doctor, called another Doctor, who called another he knew.

They all came to see me, to try and figure out what was wrong in my head?

What was this fuss all about?

“Could it be something rare? Could it be something quite new?”

Came a voice from the doorway where all eyes suddenly flew.

It was Dr. Dalmau stopping in for a look

All the Doctors were quiet, as this man wrote the book.

“I agree when you say it is not meningitis, this patient has Autoimmune Encephalitis!

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

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

 

 

Tabitha Orth 300x218 - The Cat in the Hat on Autoimmune Encephalitis

 

 

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.

 

guidestar platinum logo 300x300 1 e1605914935941 - The Cat in the Hat on Autoimmune Encephalitis

 

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.   Trivia Playing cards 3 FB 500x419 - The Cat in the Hat on Autoimmune Encephalitis 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.   AE Warrior Store 300x200 - The Cat in the Hat on Autoimmune Encephalitis

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

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Behind the Scenes

Behind the Scenes

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February 28, 2024 | by Tabitha Orth, IAES President and Founder

Thank you UCB for sponsoring all 2024 AE Awareness Month blogs.

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—-

Some of you may be aware that IAES is completely powered by a volunteer staff. Volunteers are either caregivers or patients who have walked this walk and come out on the other side. After experiencing the trauma, they harbored a strong desire to create change so no one else would have to go through the experience without the help and support they so desperately needed. Some volunteer “AE Warriors” (a term I came up with in 2014 to denote the difference between an encephalitis ‘survivor’ versus an AE patient who has a long ongoing battle), are still receiving treatment themselves. Caregiver volunteers are also currently navigating the journey of their AE Warrior who is often still battling the disease. The quality of our volunteers, many of whom have medical backgrounds and their personal experience with AE, is the ‘secret sauce’ to IAES’ success. 

I began my patient advocacy in 2014, a year and a half after becoming ill in 2013.  Back then if you did a Google search for autoimmune encephalitis, nothing came up. I was able to find information on encephalitis, but nothing on AE. I did find a new organization whose mission was to build an alliance with doctors to further research. That was great to see. However, they only listed symptoms, tests, and a single paragraph defining AE which, while it was something, didn’t help me. It was an information desert.

My search for help led me to online forums. I found groups of people, largely undiagnosed, suffering, with no compass or light to guide them. These were dark days. I learned that before AE was identified in a 2007 paper by Dr. Josep Dalmau, patients were legally committed due to being misdiagnosed as a psychiatric case. They eventually perished.  “Frightening”, doesn’t begin to cover the situation we were in. The book Brain on Fire was on the New York Times best-seller list and catapulted awareness of this strange disease. As awareness ticked up slowly in the medical community, a great deal of misinformation accompanied it. There were only three locations in the U.S.A. with doctors familiar with this. They were: The Mayo Clinic, UPENN, and John Hopkins. That was it.

When people in need come to IAES, they may connect via our international telephone line, website inquiry, or one of our social media platforms. Everyone’s inquiry is handled with care for the best possible outcome for all. Many cases have an ongoing need. These are directed to different areas of IAES where a volunteer with the expertise required is assigned a case. IAES handles cases all over the world. Doctors regularly contact us via our website to learn about diagnosis and treatment and connect with experts who can confer on their cases. IAES is responsible for countless accurate diagnoses worldwide that would have gone misdiagnosed.

Members of our community have learned the value of self-advocacy. One of our goals in our mission is to help others become strong self-advocates. Daily personal attention is given to over 7,000 individuals on Facebook alone. The educational evidence-based private support group is the only one of its kind in the worldwide community. There, questions and advocacy advice are given based on what research reports and the talented administrators with specialized expertise on a variety of topics. Tools and techniques that support the patient’s deficits while utilizing their strengths are unique to IAES and the reason members can grasp complex information in a short period. Education is power and builds confidence. Feeling in control when facing a disease like AE is key.

When people contact us, it doesn’t dawn on them that they are speaking to someone who was once in the same situation their loved one is currently in. The hope and wonder of that realization immediately changes their perspective. AE can be reversed. The patient will improve. Hope is real. As strong as we volunteers are in our endeavor to create change and improve the lives of the people we serve, we struggle with our lasting deficits. All of us have cognitive impairments. Yet, what we have accomplished and how we manage it all daily, is something to witness.

Last week I reached out to members of the Board of Directors to ask if they could watch the awareness video for this year’s awareness month. How many AE Warriors did it take to find any typos or mistakes? It took five. I won’t complain about redoing the video 3 different times to make all the corrections. They were not caught in one go-round. That’s how it is behind the scenes. It takes 3-4 times longer to get a simple thing done. The important thing is that we get it done and reach our goal.  I thought you might like to be a fly on the wall and get a behind-the-scenes look into a typical daily phone call between staff members. 

Have you ever wondered what a telephone conversation between our President/Founder, Tabitha Orth, and another member of our Board of Directors is like? Two AE Warriors with memory issues and other cognitive deficits. Here’s a sample of a portion of a typical daily conversation with Board Secretary and Support Services Coordinator, Mari Wagner Davis with Tabitha. Mari’s time zone is two hours ahead of Tabitha’s. Both women return calls from the “Bat Phone”. Oh. The Bat Phone is IAES’ International Line. The name was coined by Tabitha’s husband Jim because when it rings Tabitha would jump up to answer it and he called after her, “Quick, It’s the bat phone!”.  When the bat phone rings, someone needs help, and it is usually crisis-driven.

—–

A few minutes into a conversation:

Tab: OMG, brain glitch. Not braining well. Just woke up.

Mari: Have you had your coffee?

Tab: Nooo.

Mari: That’s okay. That’s okay. Take your time. Make your coffee.

Tab: Yes, and while I’m waiting for my brain to unfreeze, what do you think of the idea of that new program we were discussing starting as an…oh. What’s the word I want? It means ‘experimental’?

Mari: Investigational?

Tab: No.

Mari: Exploratory?

Tab: No, that is good, it’s close to the word I’m thinking of.

Mari: Trial?

Tab: Yes! Thank you! Trial. My coffee is done.

Mari: Oh, Good!

Tab: Does that sound good to you? Starting the program as a trial program and building out from there?

Mari: I agree. It does. I was calling to tell you about that phone call I handled yesterday. You know the friend of a mother back east?

Tab: Was that the one who needed to learn about available support services and a waiver for a Mom?

Mari: No, it was the ICU pediatric case. Waiver Mom Case is taken care of though.

Tab: Oh, good to hear. Well done. Got it. Yes, Pediatric ICU.

Mari: I helped them to arrange a consult with an expert. That happened. Spoke to Mom at length so I answered all her questions and she felt so much better. That one is all good and done.

Tab: Oh! Great. Perfect. I love it when things flow the way you train people to do things for us. I swear you have a gift for telling people exactly what to do and why, have them check back with you about their progress, and then they are pleased to death when you compliment them on the amazing job they have done. You have people jump through hoops and check in with you to ask, ‘How am I doing’? as they go. It cracks me up as much as I am grateful to work with you.

Mari: Thanks! It is hilarious. Are we meeting with those people about that clinical trial on Tuesday or Thursday?

Tab: I think Tuesday is the clinical trial and Thursday is the website guy. But we better check.

While I have you I wanted to update you on the Christmas Eve/Christmas Day Crisis Case. This coffee is so good, that my brain is clicking in. It had a happy ending but my gosh it was a bad one. Seizure disorder went off her meds and was having major seizures. An ambulance transported the patient to the ER. The seizures triggered psychosis and they were threatening to have her handcuffed by police and transported to a psych hospital because there was no room for her at the inn (hospital) on Christmas Eve. I’m not too fond of holidays, skeleton crews, and packed ERs. Holidays and health emergencies are a terrible combination.  It took a lot of work, more than it should have because of the holidays. She was admitted to neurology, and all is right with the world. I don’t know if that would have been the outcome if she hadn’t had a seizure right in the middle of the discussion with the attending. Lord, I was thankful for the timing of that seizure. Crazy to say you have an angel on your shoulder about getting a seizure when you need one, but that’s how it is sometimes. So, happy ending. No traumatic psych hold on Christmas. Geez.

Mari:  ERs and holidays are the worst. I’m glad it all worked out.  We are going to have a good year.

Tab: We are going to have a GREAT year! I’m excited.

Mari: So am I.

Tab: I know there was something else I needed to talk to you about, but I can’t think of it now.

Mari: That’s fine. You’ll think of it as soon as you get off the phone, so just call me back.

Tab: OK. I’ll be behind the scenes working on e-mail and the awareness video. I’ll keep an eye out for any messages.

Mari: Okay. I have a slew of requests to join the support group and will answer questions.

Tab: I saw how crazy busy your team was there.

Mari: We’ve connected with several of them, so that’s looking good. Amanda connected with several. But, yes very busy.

Tab: I’ll watch out for your welcome post, so I can say hi to everyone. See you online.

Mari: See you there. Bye.

 

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

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

 

 

Tabitha Orth 300x218 - Behind the Scenes

 

 

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.

 

guidestar platinum logo 300x300 1 e1605914935941 - Behind the Scenes

 

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.   Trivia Playing cards 3 FB 500x419 - Behind the Scenes 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.   AE Warrior Store 300x200 - Behind the Scenes

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

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis
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Creating Your Personal Health Record (PHR) Notebook

Creating Your Personal Health Record (PHR) Notebook


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

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

——

Introduction

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

Your PHR Notebook should contain:

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

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

  • A family health history (particularly parents, siblings and grandparents)
  • A personal health history (conditions, how they’re being treated, and how well they’re controlled, as well as important past information such as surgeries, accidents, and hospitalizations). If you can recreate a timeline of your whole medical history this will be helpful. Some keep this electronically as an email file that can be easily accessed.
  • Pharmacy printoutsthat accompanied prescribed medications. In a study, 40 percent of patients were unable to name a single medication.
  • Insurance formsrelated to medical treatment.
  • Legal documentssuch as a living will and medical power of attorney. POA and emergency contacts with a written release of information for the people who may assume your care.
  • Create separate sections for labs, specialty, and a daily journal that will read as a timeline
  • For students School strategies, IEPs, 504 plans, and contacts.
  • The journal should have the date, symptoms, medication changes, daily vitals if you keep these, accidents, and other pertinent information to the patient.
  • Copies of articles of interest.

 

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

subscribe - Creating Your Personal Health Record (PHR) Notebook

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

 

 

 

 

 

Tabitha Orth 300x218 - Creating Your Personal Health Record (PHR) NotebookOn 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.

 

 

 

guidestar platinum logo 300x300 1 e1605914935941 - Creating Your Personal Health Record (PHR) Notebook

 

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. 

Trivia Playing cards 3 FB 500x419 - Creating Your Personal Health Record (PHR) Notebook

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.  

AE Warrior Store 300x200 - Creating Your Personal Health Record (PHR) Notebook 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

IVIG Side Effects: When to Seek Medical Attention

IVIG Side Effects: When to Seek Medical Attention


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

 

Introduction from the IAES Blog Team:

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

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

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

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

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

——

NX NuFACTOR Blog logo - IVIG Side Effects: When to Seek Medical AttentionThis IGL blog is sponsored by NuFACTOR Specialty Pharmacy.

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

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

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

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

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

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

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

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

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

SIDE EFFECTS CHART GREEN YELLOW RED 101014 - IVIG Side Effects: When to Seek Medical Attention

 

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

 

 

 

 

 

Tabitha Orth 300x218 - IVIG Side Effects: When to Seek Medical AttentionOn 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.

 

 

 

guidestar platinum logo 300x300 1 e1605914935941 - IVIG Side Effects: When to Seek Medical Attention

 

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. 

Trivia Playing cards 3 FB 500x419 - IVIG Side Effects: When to Seek Medical Attention

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.  

AE Warrior Store 300x200 - IVIG Side Effects: When to Seek Medical Attention 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

AE Awareness Month 2023: Brain on Fire

AE Awareness Month 2023: Brain on Fire


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!

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Tabitha Orth 300x218 - AE Awareness Month 2023: Brain on FireOn 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.

guidestar platinum logo 300x300 1 e1605914935941 - AE Awareness Month 2023: Brain on Fire

 

 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. 

Trivia Playing cards 3 FB 500x419 - AE Awareness Month 2023: Brain on Fire

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.  

AE Warrior Store 300x200 - AE Awareness Month 2023: Brain on Fire 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Caregiver Honorable Mention

Caregiver Honorable Mention


November 8, 2022 | By Mari Davis

Introduction from the IAES Blog Team:

.For all Autoimmune Encephalitis warriors, it is our caregivers, friends, and loved ones we rely on every single day in our AE journey. We rely on these amazing people for everything from giving words of encouragement, to a ride to doctor’s appointments, to help us relearn how to walk and talk, and simply be there by our side. We are honored and proud to add another one of these amazing sentinels to our list of Honorable Caregivers.

 —–

I, Mari Davis, would love to nominate my husband, Geoff Davis.

Geoff has been my rock throughout the ups, downs and all the shenanigans called Autoimmune Encephalitis. I was at work when suddenly I had seizures. No warning, no nothing. I was admitted to the intensive care unit and was intubated. Geoff was there. He had no idea what was happening, but he never wavered and was there.  He had to call our college-age children and my parents to let them know that I was sick. I was sick, and he had to tell them he had no idea what was happening. He was at my side each night during my admission. He has been my cheerleader and a driving force in my efforts to become as functional as possible. In the last 5 years he has cried with me, laughed with me, and danced with me.

When it became apparent that I wouldn’t be able to return to a job I loved he cried with me. He has laughed with me while I’ve creatively tried to find elusive words. He has danced with me each morning before day rehab just to bring a smile to my face. Even when I know he was nervous about how I would do, he never let me know and he was there.

When I drove to Houston with our daughter and flew back on my own, I know he was scared, but he never let me know. Geoff simply offered support and was there. I know with Geoff, I can ask any question, no matter how crazy and he will answer it truthfully, even if the truth is difficult. He will be there. He has the patience of a saint. At times I have needed as much saintliness as possible. He had no idea how I would do long-term. He had no idea if the person I was before would be that person going forward. He was just glad I was here. And he was there.

I would also like to nominate his mother Rubye Neely for raising such a great man. Thank you, Rubye, for raising Geoff to be the person he is and the person that I know will always be there.

 

MariDavis - Caregiver Honorable Mention

 

Mari Davis, RN, ACM

Support Services Coordinator

International Autoimmune Encephalitis Society

 

 

 

 

 

 

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

Tabitha Orth 300x218 - Caregiver Honorable MentionOn 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.

guidestar platinum logo 300x300 1 e1605914935941 - Caregiver Honorable Mention

 

 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. 

Trivia Playing cards 3 FB 500x419 - Caregiver Honorable Mention

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.  

AE Warrior Store 300x200 - Caregiver Honorable Mention 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Points of Light Award: A beacon of light, love and hope for all of us!

Points of Light Award: A beacon of light, love and hope for all of us!

August 10, 2022

Tabitha Orth 300x218 - Points of Light Award: A beacon of light, love and hope for all of us!Our very own International Autoimmune Encephalitis Society President and founder, Tabitha Orth, has been honored with the Points of Light award! Tabitha & IAES would like to thank Points of Light for this honor. It is our fondest hope that all those suffering from Autoimmune Encephalitis, their caregivers, families, and friends have a less traumatic AE journey through the services IAES provides.

President George H.W. Bush, founder of Points of Light, said “The solution to each problem that confronts us begins with an individual who steps forward and who says, ‘I can help.’” President Bush founded the award in 1990 and formally recognized more than 1,000 volunteers as “points of light” during his administration.

President Bush saw the challenges facing the world as far-reaching and complex, and the solutions often felt out of reach. To tackle society’s greatest challenges and build a better future, he felt we must engage a wide range of people to make a positive difference in the world.

The Daily Points of Light Award honors individuals who change the world. Millions of people act on their power to do good every day, using their hearts, hands, and minds to help strengthen communities and solve persistent problems. On June 16th, Tabitha Orth, President, and Founder of International Autoimmune Encephalitis Society officially became the 7,315th “point of light”.

 

 

Below, please find comments from Mari Wagner Davis:

I nominated Tabitha Orth for the Points of light award because to me that is what she and the International Autoimmune Encephalitis Society have been to me, A Point of Light. A true beacon in the darkness of my illness. I was a nurse case manager who had seizures at work and was diagnosed with limbic encephalitis. I have no memories of my time in the hospital but seemed to become aware of my surroundings in day rehab. I then looked for information and support and found that the International Autoimmune Encephalitis Society provided the most accurate and helpful information available. As I recovered more, I was able to volunteer and, in that role, Tabitha helped me make use of the skills I still had despite my memory issues and fatigue. She is a never-ending cheerleader and a great role model as well as an expert at helping others understand the complicated medical world of Autoimmune Encephalitis. It was a no-brainer to see she was the perfect candidate for the award.

~Mari Wagner Davis

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

Tabitha Orth 300x218 - Points of Light Award: A beacon of light, love and hope for all of us!

 

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.

 

guidestar platinum logo 300x300 1 e1605914935941 - Points of Light Award: A beacon of light, love and hope for all of us!

 

 

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 patients 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 support research, 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.  Trivia Playing cards 3 FB 500x419 - Points of Light Award: A beacon of light, love and hope for all of us! For those interested in autoimmune encephalitis 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.   AE Warrior Store 300x200 - Points of Light Award: A beacon of light, love and hope for all of us! 

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

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis
Independence Day!

Independence Day!

June 29, 2022 | By Jeri Gore

If you have Autoimmune Encephalitis or are a loved one or caregiver of someone with AE, you know dependance. The AE Warrior is dependent. We are dependent on many things be it friend’s and family’s ability to take us to doctor’s appointments, rehab, food stores or for a simple ride around the countryside. We are dependent on canes and walkers, computers, and sign language for communication. We can be dependent on stair or wheelchair lifts. We are dependent on medical teams to understand AE and suggest best treatment options. We are dependent on our AE family as a community to get us thru a particularly bad day or week or month. We are dependent on the minds and hearts of others to help, accept, understand, and love us.

If you live in the United States, you know July 4th, every year, is a national holiday. It is Independence Day. It is a day much celebrated with family or friends, with fireworks and cooking out. It is a day of fun and laughter and overall joyful celebration.

If you are an AE Warrior, you know the need and desire for independence. Our dependence on the many things we need to survive AE may not have been on our mental radar before AE took over our lives in one form or another. For an AE Warrior, independence may mean many things. It may mean not needing someone’s help to turn on the lights or start your computer. It may mean no longer requiring a cane to be able to walk. It may mean no longer needing one infusion or another. For me, independence was the ability to drive again. That day is forever seared into my brain. I felt like driving down some country road, windows wide open, sun on my face and singing at the top of my lungs. It also came when I was once again able to concentrate enough to be able to read and understand a book. I felt like I had conquered a giant mountain!! I felt independence and it felt good, really good! I wanted to shout it from a mountain top!

In the spirit of celebration, I suggest we honor our AE independences big and small. We may or may not celebrate with cook outs and fireworks but maybe a little ‘happy’ dance in the kitchen or phone call to a loved one. May we learn to commemorate those small and large events that mark progress in our AE journey. This may not be easy some days but maybe, just maybe if we celebrate these small milestones of progress, it will help propel us onward on those other days when forward progress seems slow or nonexistent.

Happy AE Independence Day to all of you AE Warriors, loved ones and caregivers!!

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

Tabitha Orth 300x218 - Independence Day!

 

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.

 

guidestar platinum logo 300x300 1 e1605914935941 - Independence Day!

 

 

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 patients 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 support research, 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.  Trivia Playing cards 3 FB 500x419 - Independence Day! For those interested in autoimmune encephalitis 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.   AE Warrior Store 300x200 - Independence Day! 

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

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis
Letters to Our Before AE Selves, Part II

Letters to Our Before AE Selves, Part II

February 22, 2022 | AE Awareness Month Special Series

Introduction from the IAES Blog Team:

Welcome to Part II of the IAES Blog series for AE Awareness month 2022; Letters to Our Before AE Selves. We are privileged to present the following heartfelt letters written by AE patients (AE Warriors) and caregivers to themselves, or the loved one they care for.

The following compilation of letters expresses the thoughts and feelings we would write to our ‘Before Autoimmune Encephalitis’ selves. They express what we would want ourselves to know, or our loved ones to know, if we could have been given a foreshadowing of how our lives would be pivoted on its axis due to autoimmune encephalitis.

Some letters are from our loved ones to us, and some are from us to ourselves. Long or short, happy or sad, all are heartfelt and are sure to lift your spirits. We hope you thoroughly enjoy Part II of this two-part series.

~

The first letter we share is from IAES member and AE Warrior Angie Fitch to herself:

Dear Angie,

You are so blessed! Get out there and walk your dogs more because there may come a day you might not be able to.  Enjoy time with your friends, meeting new people and going outside because a day may come that you are barely able to get off the couch and become isolated. Take pride in being able to multitask, even if that only means being able to walk and do something else at the same time. Go for that run because one day you may give anything to be able to do it, so do it!

Don’t take for granted the ability to speak the words you intend to say because one day those words could leave your mind. Talk about and cherish memories because one day they may not exist anymore. Enjoy the sounds of the world around you as one day those very sounds may cause you extreme pain and anxiety.

Don’t ever take for granted driving a car, cooking dinner, swinging a golf club, having a conversation, going to the grocery store, walking, talking, breathing, or sleeping because these things are not a given for everyone. Things come easily for you, and you learn fast. You’re a hard worker, very active, social, and fun. Cherish these qualities as everything can change in a moment and the ‘simple’ things you take for granted today, may be gone tomorrow.

Finally, never lose hope no matter what life throws at you. Make sure to count your blessings every day, even when the world comes crashing down on you. Always count your blessings; because there are so many, and those blessings are what will help you to never lose your strength, hope and happiness. No matter what life takes from you, it can’t take that.

Love, Angie

~

The second letter is from Kimberly Sorin to her grandson Colban Sorin:

Dear Colban,

You came to live with me a confused and sad little boy. Eventually you became vibrant, funny, and always smiling and laughing. Over the years, as you get older, many things will happen that will shape you into the man you’re to become. There may be days when you feel like there’s no reason to smile. There may be lots of tears and anger, moments may be forgotten. These things may come back to you but in a different manner. Don’t lose your sense of self, keep fighting…and know that I will always be right there by your side.

Always, love you to the moon and back,

Grandma

~

The third letter is from IAES member and AE Warrior Ryann Henn to herself:

Dear Ryann,

Things right now are going okay, but there will be answers to questions you had about yourself and the way you have been acting and feeling. You need to know there are so many people out there that care and love you more than you ever will know and expect. Everything will be okay. I know you are scared about the future, but the people that love you are here to guide you. They will never leave your side. You will feel love like you never have before, and it will inspire you to work hard in recovering. Don’t lose touch with yourself and what you are most compassionate about, animals, people, and creativity. And take it easy on yourself, it’s okay to take a nap.

With lots of love, Ryann

~

The fourth letter is from IAES member, IAES Chief-Resilience Officer and AE Warrior Tessa McKenzie to herself:

Self,

First, let me assure you, you’re not crazy.  God is with you and you will feel okay again.

You are the 1 in 100,000 in this “boot camp for the soul” called autoimmune encephalitis. 

Doctors can’t diagnose you right now and loved ones don’t recognize you, but your brain is inflamed and it’s not your fault. 

There is a lot that doesn’t make sense right now.  When your soul is weary, and God is nowhere to be found, know he’s still there and keeps his promises.  When prescribed medications don’t work, know the right ones will eventually provide respite to your exhausted body.

Your life will go on past this experience – the sleepless 60 days, disorientation, panic, visual impairment, tachycardia, and memory loss…

And one day, you won’t view this as much of a curse as a unique gift to pay forward in empathy for those you feel alone, suffer, and are misunderstood. 

Above all, remember, “all things come together for the good of those who love God (Romans 8:28).”

Love,

Me

~

The final letter is from IAES member, AE Warrior and blog editor Jeri Gore to herself:

Dear Jeri,

Wow! Where do I even begin? Sometimes I feel like I want to write you a very long letter and sometimes it is short and sweet. I suppose today it falls somewhere in between.

First of all, Jer, you always like things black and white. You like the lines of life to be clear, precise, and not muddled. Well, Chica, if nothing else, the next few years will show you that this beautiful life you live is anything but black and white and the lines are muddled in a wonderful array of color and emotion. You may think that happenings in your past were tough or trying but, in all actuality, they set you up for what has become the most amazing journey you have taken to date. You will see confusion on the faces of your loved ones, you will feel pain and sadness in their eyes, and you will want with all your heart to take it from them and carry it yourself. You will learn the meaning of love like you have never known it to exist. You will see your life and the lives of others transformed by an illness so new to so many. Above all, Jer, you will know the meaning of the word grateful on many levels. You will be grateful for your past and your present because it has brought you to this place and to these people that have become a family of Warriors like you never knew existed.

Love always, Jeri

 

 

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guidestar platinum logo 300x300 1 e1605914935941 - Letters to Our Before AE Selves, Part II         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.  Trivia Playing cards 3 FB 500x419 - Letters to Our Before AE Selves, Part II 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.   AE Warrior Store 300x200 - Letters to Our Before AE Selves, Part II 

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

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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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