A Look Back at Autoimmune Encephalitis Awareness Month

by tabitha orth | Mar 30, 2020 | AE Awareness Month, AE Warrior Personal Stories

April-1-2020 | Barbara Layt Vujaklija, RN

Now that frantic February is finally over its time to look back and take stock of what we achieved. World Encephalitis Day (WED) was started by the Encephalitis Society in October of 2013 and has been held every February 22nd annually since then. The purpose is to raise awareness of encephalitis globally. The International Autoimmune Encephalitis Society (IAES) has participated in WED annually since its formation. This year IAES designated the month of February to be Autoimmune Encephalitis (AE) Awareness month and will continue to exhibit the face of AE every year.

So, what did we do to bring attention to AE in February 2020? IAES President, Tabitha Andrews Orth, put together our 4^th annual AE awareness video. This wonderful video features members who were kind enough to send photos of themselves in treatment and before and after shots. The AE Warriors Stepping Forward video was a great success so thanks to all who participated.

Our annual Virtual Arts Show 2020 was a beauty to behold. Filled with talent. Drawings and paintings, poems and short stories. It was an outpouring of emotion from the hearts of AE Warriors from all over the world. If you ever want to know what it feels like to have AE look no further.

We rolled out a selection of AE awareness products that provide the support and encouragement of everyone in the AE community’s desires. AE Warrior Gifts, now available year-round, features the Royal Registry certificates for the AE warrior ™ and Caregiver. These certificates recognize the heroism in battling AE by the patient and caregiver for their heroism under fire. Survival Kits for AE patients, caregivers, doctors, RNs, Kids, and parents were created, and many members gave these out. Candy bar wrappers with fun encouraging statements were developed for fundraising efforts and are available for free as well as a unique AE Medical Identification card IAES developed.

With all these great things going on there was still a magnificent topper to the month. Tabitha and her team rolled out a first of their kind Autoimmune Encephalitis Trivia Playing Cards Deck. These remarkable cards were developed with assistance by Dr. Dalmau and have questions and answers about AE to use for quiz games with families, who want to know more about AE, doubles as a rehabilitation tool or can just be used as playing cards. The original art on the cards was done by a fellow AE warrior, Julia King. Complimentary decks are being sent out to AE doctors on our Doctor’s List. The excited responses IAES is receiving from doctors about AE Trivia playing cards are filled with praise and congratulations in developing the ideal tool for AE patients, families and therapists. AE Trivia playing cards are on sale to the public and all proceeds will go to support AE research. Well done team.

So outreach for the first annual Autoimmune Encephalitis Month was a big success and thanks to all the members, caregivers and volunteers who put in their time and hearts to make it happen.

Of course, the culmination of the month is February 22^nd and World Encephalitis Day. Many members sent in updates around this date and pictures to show before and after views that we decided to share some of them in case you missed them the first time around. So here are some great pictures and a few quotes to go with them.

From Renee Sanchez, “Well today’s the day! Almost exactly 5 months from her first seizure, which would be the last day of work and the beginning of this nightmare for our daughter, she is going back to work!”

From Paula Lee Ramirez, “Happy world encephalitis day

From ICU September 2017 to now. Symptoms started in August 12, 2017. I wasn’t admitted and believed I was sick until September 17,2017. Diagnosed on October 3, 2017 with ANTI-NMDA Receptor encephalitis. I have yet to relapse! ❤️

Lucy May Dawson, “Today is World Encephalitis Day. I, like 78% of people, had no idea what Encephalitis was until the words fell out of my neurologist’s mouth after I was misdiagnosed as having had a mental breakdown and had spent 3 months in a psychiatric ward…….Regardless, I am one of the lucky ones, and I hope that by continuing to post about encephalitis, someone will one day remember one of my posts when their loved one begins to act strangely, and they will ask their doctor to test for it, and it may just save a life”.

Daisy Garuvadoo: World Encephalitis Day today, from being critically ill with Anti-NMDA Receptor Encephalitis in Nov 2017, 2 years ago, having to relearn to walk, speak, to brush her teeth. to get dressed, to read, to write, to learn basic maths, to tell time and to regaining her cognitive abilities to Medical School and thriving. Yesterday, my daughter was honored for her research project related to Intrathecal procedures at her Medical School. INTRATHECAL RITUXIMAB TREATMENT(though the spine) IS WHAT SAVED HER LIFE.

Kimberly Anne Thompson I beat this. I have no lasting side effects. But awareness is so important… Because Encephalitis often presents with psychiatric symptoms it is often misdiagnosed… I spent six weeks in a Psychiatric Hospital originally diagnosed with having a Nervous Breakdown. I was given meds that only made My condition worse. It wasn’t until I started having Seizures and the Encephalitis began affecting My Heart that I was transferred to ICU and had a Lumbar Puncture which showed I had Anti-NMDA Encephalitis…. It is this delay that kills. I urge all Medical Professionals to consider Encephalitis in Patients that present with Hallucinations for the first time… You could save a life.”

Grace Harimate, It is world Encephalitis Awareness day today yesterday in NZ time…. as I contemplated sharing these images and my story, my heart was pounding … I wanted to forget but this ordeal you’ll never forget…I was misdiagnosed and mistreated with bipolar taking the wrong medications and wrong treatment for 6 years from 13y to 18y. Spending most of my teenage years in the mental health ward. But so glad I met the most amazing people in those years…..The hard part was to come when I woke up from a two-year coma… I was fully blind for one-year memory loss still tube fed etc.
I was determined to walk … determined to get my eyesight back determined to get back on that horse determined to get a job … I walked into my 21st blind.

These awesome warriors and their brave care givers look at World Encephalitis Day and the new Autoimmune Encephalitis Month as a milestone. Where was I last year and where am I now? Some who have been floundering in a wilderness of lost memories have found their way or at least see a light at the end of their tunnel. Some are still, though making progress, struggling with issues others cannot even begin to imagine. Not only one year at a time but moment to moment. Some have been in comas only to wake up to a new truth, new situation, others are missing months or years of their lives. People they will never see again and new members of family and friends they are only meeting now. Such is the nature of Autoimmune Encephalitis. Your own body turning on you and messing up your brain. Sometimes making you hear, see, taste or smell things that are not there. Trying to make the family and friends in their lives understand the impossible.

March on brave warriors, continue to fight and savor your special month and the day set aside for you every year. May your lives look better next February.

Your generous Donations allow IAES to continue our important work and save lives! Due to the coronavirus pandemic, the need for our services has surged exponentially. Some cases of COVID-19 have affected the central nervous system and medical researchers are suspecting the infection could cause ADEM, type of Autoimmune Encephalitis. Donations of any size are vitally important to meet the increased need in our community. If you have the ability to set up a reoccurring monthly donation, it will be greatly appreciated and will immediately begin to help patients and families during this historic time.

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

AE Awareness Month 2020

by tabitha orth | Feb 8, 2020 | AE Awareness Month

International Autoimmune Encephalitis Society founded AE Awareness Month in 2020 to shine a light on Autoimmune Encephalitis. AE Awareness Month is the biggest month of the year for the AE community. It is a time when the entire community comes together to raise awareness of this treatable group of diseases.

Our main goal is to raise awareness among the public and medical community, especially first responders such as Psychiatrists and Emergency Room Clinicians, about AE and its impact on patient’s lives and the lives of the family members, loved ones and caregivers who support them.

Anyone can get involved in this International effort. Get involved today to shine a light of autoimmune encephalitis.

1. Autoimmune Encephalitis Trivia Playing Cards

AE Trivia Playing Cards

IAES in collaboration with Dr. Josep Dalmau has created the first product in the world specifically addressing the needs of the AE Warrior™ and those impacted by AE. ALL proceeds will support Dr. Dalmau’s research group. Stay tuned for the announcement of this exciting educational and rehabilitation tool. It is destined to become the most vital product anyone touched by autoimmune encephalitis should purchase. A true game changer in helping you to become a strong advocate, receive an outstanding educational foundation about AE doubles as a rehabilitation tool!

Order AE Trivia Playing Cards

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2. Become an IAES Angel and receive a facebook picture frame announcing that you have

The IAES Angel has lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life. IAES Angels are motivated by their Spirit of giving. They are Champions in raising AE awareness.

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website. As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

3. AE Warrior and AE Caregiver Royal Registry Certificates

Bestow these certificates on your AE Warrior™ or Loved ones

The Royal IAES Registry designates The AE Warrior™ and AE Sentinel with Royal Title. In recognition of their heroism under fire. The Royal IAES Registry is the highest honor to be bestowed upon those engaged in the mighty autoimmune encephalitis battle. Without warning and within an instant, these unprepared citizens were thrust unto a perilous fire raging battlefield. To fight demanded that they dig deep into the depths of their soul for the inner-strength they had to summon to save their life or the life of the one they loved. This act is so rare IAES sanctifies and affirms by sealed decry the bestowing of Royal Title into the IAES Registry.

AE Warrior 2020 Certificate watermark - AE Awareness Month 2020

4. Watch and Share our Awareness video AE Warriors Stepping Forward

AE Warriors Stepping Forward

This inspiring video shows the wide age range and diversity of AE patients, it explains what AE is in simple terms and provides key RED FLAG warnings to any medical professional who views it. This is IAES’ 4^th annual awareness video. Proceeding videos have had a powerful impact on raising AE awareness and has lead to many patients receiving an accurate diagnosis.

5. Get your Story in your Local Newspaper or Television Station

Breaking News!

IAES has done the work for you. Download our press release and directions. Reports will use quotes from experts cited in the press release as well as contacting the doctor who diagnosed you. This raises awareness on a much larger scale and only involves a few simple steps.

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6. Hold a FUNdraiser or Awareness Event at Work, School or Your Home

By going to our FUNdraiser Page, you will see several ideas for all ages that allows you to have FUN and raise awareness for AE at the same time.

7. Assemble AE Survival Kits

Share your love and encouragement by purchasing a survival kit, (Goodies not included). IAES has created 11 different variations of these kits that are bound to bring smiles of pleasure to those who receive them. Create a kit for your AEWarrior™, AE Mom, Doctor, Psychiatrist, Nurse, Infusion day, Child or Caregiver. These kits are available year-round.

Survival Kit AE infusion - AE Awareness Month 2020

8. Raise Awareness with IAES Candy Bar Wrappers

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IAES has created 14 unique candy bar wrappers you can raise some sweet awareness. These free wrappers include sentiments for people in the AE community and public. These wrappers can be given as your simple act of kindness or used as a fundraising vehicle. They are a wonderful way for children and siblings to get involved in fundraising and raising awareness as well. Candy wrappers will be available throughout the year.

9. Print and share this AE Infographic

Post this Infographic throughout the month on your social media platforms and also download it onto card stock paper and give it out at school, work, gym or your place of worship.

10. The IAES Virtual Art Show

Tour the IAES Virtual Art Show and share the link on your social media platforms. Showcased is art in a variety of forms done by patients, siblings and caregivers of all ages. Experience a special insight into AE through their eyes and experiences.

I’ll never have a ‘normal’ Life

by Melody Wilson | Feb 23, 2019 | AE Warrior Personal Stories

February 23, 2019 | Maddy Boehme

Great Expectations: Maddy’s Story 10:43 minutes

On my 19th birthday, I had an appointment with my doctor. I was a freshman in college, taking three classes a semester. That was all I could handle.

Every waking day was spent in the clutches of my bully. It weighed me down with constant fatigue and pain like nothing before. It was like my brain had been tossed in a frying pan and seared to a crisp.

I tried to ignore it, push through the pain, pretend as if my body had the capabilities of a normal person, but I’d always crash no matter how desperately I craved a normal life.

Every night, I hoped to escape my reality in a deep sleep, only to be met with insomnia. I was sure it came straight from the depths of hell. No amount of deep breathing or relaxing music or sedatives ever touched my sleeplessness.

By my 19th birthday, I had been waiting almost three years for a magic pill to get me back to my old, struggle-free self. I had tried several different treatments. Some of them helped but none of them seemed to “fix me.”

I was hopeful about finding a solution. But, by that point, I should have known that nothing in my life was ever going to turn out how I expected. During the appointment, my doctor said that we had tried every treatment in the book for this disease. I’ll never forget the moment he looked me in the eyes and said, “This is as good as it’s going to get.”

This was not the best gift I’d ever gotten.

I was crushed as the reality of my disease hit me: I would never have a “normal life” or be my old self again.

Up until my sophomore year of high school, I got straight As. I ranked fifth in my class. I had fun hanging out with friends. My only worry was what I was going to wear tomorrow or if I was going to get a good grade on that geometry test.

But then, I started having these weird spells where I would lose the ability to walk and talk. I would cry, uncontrollably, for hours at a time, and I had no idea why I was crying. At first, this happened every couple of months. But as time went on, these spells became more frequent and severe.

While my classmates were out finding dates for the prom or going to high school football games, I was often headed for the ER. It got to the point where most of the hospital staff knew me by name. They’d see me come in and know exactly what to do: load me up with painkillers and sedatives until my body finally quit its mysterious rampant rage.

The drugs often left me stoned for days. One time, I was admitted to the hospital to be monitored overnight, but I have absolutely no recollection of it. The ER visits eventually became a blur in my doped-up memory as they quickly became my day-to-day reality.

I missed my junior year of high school. Instead, I went to several doctors searching for answers.

Some of them said these bizarre spells were all in my head. It was just me. After one ER visit, I found myself face-to-face with an inpatient treatment coordinator and was almost admitted to a psychiatric facility. I was often irritable for no reason. Complications from the disease often left me homebound. My closest friend at the time described me as impulsive with a crazy mood and a bad memory. I struggled to keep friends.

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Maddy Boehme Shares her story to spread awareness of Autoimmune Encephalitis

Eventually, I ended up being diagnosed with autoimmune encephalitis, which essentially means that, one day for unknown reasons, my body decided to start attacking my brain.

Now, I receive infusions every other week to put good cells in my body and make my symptoms less severe. At times, I can be on a lot of steroids, which makes me look like a human marshmallow. My face gets really puffy, and I have really bad munchies, so I’ll be down in the kitchen at 3 a.m. eating five bowls of cereal. I’ve also had chemotherapy to try stop my body from attacking my brain.

I’ve been living with this disease for about five years now. I haven’t been able to take on a full course load since my sophomore year of high school. Residual issues of ADHD, dyslexia, depression and anxiety are my new reality, and I’ve had to relearn how to use my brain. I struggle to live a normal life, but I am lucky to be alive. Most people with this disease end up in psychiatric facilities; they go undiagnosed, fall into a coma and die. I survived.

My life is far from what I expected. I thought high school would be football games and weekends with friends, after-school activities and sports. I thought my college experience would be attending a four-year school far from home, living on my own, doing whatever I wanted, whenever I wanted, meeting boys and making new memories with lifelong friends.

Life can take a lot of things from you. But I’ve come to appreciate the unexpected and the perspective it’s given me. It’s brought me to places, people and opportunities that I never would have imagined.

With the help of my teachers, I graduated from high school. And after three years in neurotherapy, I made honor society for the first time in college last month. I was selected as a member of my hospital’s Patient Advisory Council and I’ve been able to give back to the people and place that saved my life. I’ve shared my story with the local newspaper and news stations to raise awareness for this peculiar disease. I even had the opportunity to speak to a classroom of kids at the school I attended growing up. I even get to share my story with all of you.

I’ve made it my goal in life to collect as many experiences as possible. I pierced my nose on a whim, and I’ve dyed my hair various colors of the rainbow. I’ve flown in a helicopter, twice. I lost 25-pounds worth of that steroid marshmallow fluff. I adopted a dog. I modeled in a fashion show. I learned how to play guitar and piano. I traveled to France. And just last week, I got my very first tattoo.

I don’t know what the future holds for my health, so I live for every day that I’m given.

My 19th birthday could have been the worst day of my life. But in that moment of devastation in the doctor’s office, something clicked.

It was on that day I decided to stop waiting around and expecting everything to be “normal” again. I realized life is about letting go of every expectation we have about what life should be. Life is about taking the challenges we’re given and defying expectations.

Support our mission by becoming a card carrying member of International Autoimmune Encephalitis Society. For as little as $20 a year, you can become a ‘Basic’ member. Your membership includes a small gift of thanks from IAES along with your membership card.

image 5 1 - I'll never have a 'normal' Life

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 premiere organization leading in these vital roles.

image 23 - I'll never have a 'normal' Life

The Invisible Disease

by Melody Wilson | Feb 22, 2019 | AE Warrior Personal Stories

February 22, 2019 | Lisa Lauter

World Encephalitis Day – Lisa Lauter Tells Her Story 13 minute video

I was diagnosed with LGI1 Autoimmune Encephalitis (AE) in February 2018. Encephalitis is a devastating brain disease that affects about 500,000 people worldwide. The type that I have is called LGI1 Autoimmune Encephalitis – it is extremely rare and known to affect about 0.83 people in a million. With Autoimmune Encephalitis the body starts to produce an antibody that attacks the brain. In my case, this led to seizures, problems with cognitive function such as short term memory loss and aphasia which makes it difficult for you to find the right word when speaking or trying to write something down. It also affected my mobility, and I was dependent on a walker for 3 months and then a cane for a further 3 months after that. Sometimes Autoimmune Encephalitis causes psychiatric symptoms too but I was fortunate to not experience those.

February 22nd is World Encephalitis Day. Due to the rarity of this disease, it is important to tell my story as it often takes many months to reach an accurate diagnosis and begin treating this disease. The more people that know about this disease, both medical professionals and family members, the more likely we are to improve patient outcomes. Since I started telling my story in January, I have already met a Houston family whose daughter is being treated for presumptive AE, and I’ve been helping a friend in Singapore who is a school counsellor learn more about AE as one of her students has AE and is struggling.

Every patient is unique in their journey but there is often a common thread. Looking back, I know that my symptoms started in September 2016. I started experiencing numbness and tingling in my forehead that spread under my eyes, as if I was wearing a mask. In late May 2017, I also started having numbness and tingling down my left side, affecting my left arm and left leg. I would have moments where I would be walking or talking or eating and I had to pause to let a strange feeling kind of wash over me. As a family, we started calling these moments “episodes” and I would just pause what I was doing for a few seconds until it passed. I wouldn’t know until months later that these “episodes” were actually Partial Focal Seizures and I was having 40+ a day. I was diagnosed with a seizure disorder, Epilepsy, shortly after I had a Grand Mal Seizure in July 2017.

I was put on several different seizure medications to try to control the seizures. The combination of seizure drugs eventually reduced my seizures to about 10 a day but I had increasing fatigue and was starting to show signs of short term memory loss, aphasia (where you can’t find the right word when speaking or writing), and problems with my walking – my left leg would limp and drag. An MRI showed possible Limbic Encephalitis so I was treated with IVIG infusions and this stopped me from having seizures on October 25, 2017.

Unfortunately I continued to decline and was admitted to Houston Methodist in December 2017 for five days of steroid infusions. My condition deteriorated so rapidly that I was now dependent on a walker to get around the room. I was very weak and we were very worried. I would spend the next 6 months attending five hours of therapy a week, gradually reducing to two hours a week by May 2018. It took a lot of work to graduate to using a cane 3 months later and then gradually giving up the cane too.

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Everything we were learning about AE indicated that early and aggressive treatment led to the best outcomes. Were we doing enough only with the hours of therapies each week? We decided to seek a second opinion at Duke University Medical Center. After the results of another Lumbar Puncture (spinal tap), blood tests and another MRI, I was finally diagnosed with LGI1 Autoimmune Encephalitis. I now receive infusions of Rituximab every 6 months to teach my body to stop making these antibodies. Hopefully, one day I will no longer need these costly infusions but current research indicates that the relapse rate is high and we just don’t know how long I’ll need treatment.

It is now January 2019 and I am proud of the huge gains I have made over the last year. I no longer use a walker or a cane and recently started walking about 2 miles about 5 times a week. I continue to go to TIRR (Texas Institute of Rehabilitation and Research) for Physical Therapy twice a week to work on regaining the strength that I have lost. I started driving again last September, although I rely on my friends, children (now two of them drive) and my husband to do most of the driving. I am only comfortable driving in a bubble between my home, Wholefoods and my children’s school (about 7 miles end to end).

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This stage continues to be challenging, but in different ways than 2018. Now my disease is largely invisible, except to my family and closest friends. I suffer from Brain Fatigue and have to be very careful to not over commit or over extend myself daily. I have become good about saying “that doesn’t work for me” when managing my commitments. I get headaches more frequently than I ever did and I still battle fatigue. When I am physically tired, Brain Fatigue affects me by causing aphasia and short term memory issues as well as gait changes where I begin to limp and drag my left leg again. I tire very easily driving and even being a passenger in a car can be exhausting for my brain. Being in a room where multiple conversations are occurring is very challenging for me as it is difficult to filter out the extraneous noise and focus my attention. But most of these effects aren’t outwardly visible and that is what makes it challenging.

I will be forever grateful for my ultimate diagnosis and recovery to date. I will be forever grateful that my children called 911 and my husband and family never gave up hope and advocated tirelessly on my behalf for diagnosis, treatment and aggressive rehabilitation. And lastly, I will be eternally grateful that I never, even in my darkest days, gave up hope for recovery. I somehow always believed that this wasn’t going to be the end of my story.

It is important for me to tell my story. World Encephalitis Day is February 22 and the more people that know about this disease, the greater the likelihood of faster diagnosis and treatment. Thanks for sharing my journey.

Become a card carrying member of International Autoimmune Encephalitis Society. For as little as $20 a year, you can become a ‘Basic’ member. Your membership includes a small gift of thanks from IAES along with your membership card.

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World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

by Melody Wilson | Feb 20, 2019 | AE Awareness Month

February 20, 2019 | Tabitha Andrews Orth

World Encephalitis Day is the Friday, February 22nd. This is a single day when everyone in the Autoimmune Encephalitis community works to bring awareness to AE. If you have AE or know a loved one battling the disease, your participating can make all the difference in the world.

What can you do to participate?

1. Use a profile frame on your FaceBook profile picture to raise awareness from now until WED

2. Encourage people to tour our Virtual Art Show. Amazing and inspiring art done by patients and their loved ones which include stories of the artists. Share the link on all your social media and post it on your timeline. You will find the Art Show under Inspiration Gallery on our website.

3. Create a FaceBook fundraiser for IAES to support our mission in spreading awareness in the medical community/general public, helping patients/families reach best outcomes and encourage research.

4. Post our awareness video: You Are The Reason ~on World Encephalitis Day~ utilize all your social media platforms. This year’s video has already surpassed our expectations in reach. Your post may save a life by leading a patient to become accurately diagnosed.

5. Become a card carrying member of International Autoimmune Encephalitis Society. For as little as $20 a year, you can become a ‘Basic’ member. Your membership includes a small gift of thanks from IAES along with your membership card.

6. Share/Post this informative meme that explains what Autoimmune Encephalitis is in easy to understand language. Share it on all your social media platforms. A Downloadable/printable version is located on our ‘Living with AE page’ on our website.

7. Make a $10 donation to IAES on World Encephalitis Day

8. Direct people to our website

9. Use #RED4WED #WED #Worldencephalitisday #IAES in your posts. Tag friends and ask them to share your posts so more people are reached.

10. Distribute the Gold Standard paper: A clinical approach to diagnosis of autoimmune encephalitis. This vitally important paper was written by 26 experts around the world who collaborated to ensure that a patient with AE be easily identified in any hospital with equipment readily available.

AE Warrior Gains His Wings ~ World Encephalitis Day Special Edition

by Melody Wilson | Feb 22, 2018 | AE Awareness Month

February 22, 2018 | Jenny Goetsch-Lawrence

On April 20, 2016, my brother, AJ, checked in to Theda Clark Hospital in Neenah and made a Facebook post stating that this would be his home for the next few days. Little did he or we know that this would not be the case. His symptoms began with tingling in his hands and feet and balance issues, which he thought may be a complication with his Type 1 Diabetes. After having an initial MRI, his doctor wanted him to check in to the hospital for further testing.

For the next couple of months, AJ remained at Theda Clark and endured numerous spinal taps, CT scans, MRI’s, rounds of steroids, plasmapheresis, daily blood draws and therapy sessions. Our Mom stayed with him six days a week while I stayed with him the other day to give Mom a break. Our Dad made the daily trip from Sheboygan to Neenah to be with AJ and help out with his therapy sessions. It took quite some time before AJ was finally diagnosed with Autoimmune Encephalitis.

On July 11, 2016, the day after AJ’s 35th birthday, he was moved to a facility in Madison and remained there until July 31, 2016 when he was moved to UW Health, also in Madison. Once at UW, AJ underwent chemotherapy treatments with Rituximab and then a brain biopsy. Both efforts resulted in no positive results. On August 24, 2016, our family was asked to have a meeting with his team of doctors. In this meeting we asked the question, “Does AJ have brain damage and if so, to what extent?” In the following minutes, all breath and life was sucked out of us when the head Neurologist told us that AJ had severe brain damage and would never come back to us in any shape or form. In the next few days, our family had to make the decision to remove him from all life sustaining treatments. We had him moved to Sharon Richardson Hospice to be close to home so that family and friends could say their last goodbyes. AJ gained his wings and entered eternal life on September 2, 2016.

Prior to his illness, AJ was a volunteer firefighter/paramedic and was the owner of his convenience store, Route 32 in Krakow, WI. AJ lived life to the fullest and was always there to help anyone in need, friend or stranger. Our family still has many unanswered questions regarding his illness and we know the answers will never come. The only thing we do know is that we have our very own guardian angel looking down on us.

Symptoms of AE. Click Image for more information.

Early Diagnosis and aggressive treatment of Autoimmune Encephalitis lead to best outcomes. It is of the utmost importance that a Neurologist specializing in the field of Autoimmune Neurology oversee these cases. Since AE was first identified in 2007, it is not widely known and patients are easily misdiagnosed or experience a delay in diagnosis. Refer to our Doctor’s list for an experienced physician near you.

Recognizing Signs at onset of Autoimmune Encephalitis, Diagnosis and Treatment

Donate to Support IAES and our Life Saving Mission

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 premiere organization leading in these vital roles.

Our main goal is to raise awareness among the public and medical community, especially first responders such as Psychiatrists and Emergency Room Clinicians, about AE and its impact on patient’s lives and the lives of the family members, loved ones and caregivers who support them.

Anyone can get involved in this International effort. Get involved today to shine a light of autoimmune encephalitis.

1.

Autoimmune Encephalitis Trivia Playing Cards

AE Trivia Playing Cards

2.

Become an IAES Angel and receive a facebook picture frame announcing that you have

3.

AE Warrior and AE Caregiver Royal Registry Certificates

4.

Watch and Share our Awareness video AE Warriors Stepping Forward

AE Warriors Stepping Forward

5.

Get your Story in your Local Newspaper or Television Station

Breaking News!

6.

Hold a FUNdraiser or Awareness Event at Work, School or Your Home

7.

Assemble AE Survival Kits

8.

Raise Awareness with IAES Candy Bar Wrappers

9.

Print and share this AE Infographic

10.

The IAES Virtual Art Show

Your Tax deductible donations help us save lives and quality of lives.

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