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When Your Brain is on Fire

When Your Brain is on Fire

brain on fire

January-22-2020 | Carolyn Keating, PennNeuroKnow

Imagine you’re a bright twenty-something with a new job and a new relationship.  Everything seems to be going your way until you start becoming paranoid and acting erratically.  Then come the hallucinations and seizures.  You’re admitted to a hospital where you’re (incorrectly) diagnosed with a psychiatric disorder.  You swing from violence into a state of immobility and stupor.  And perhaps even scarier?  You don’t remember any of it.  Sound like a nightmare?  Well, it actually happened to Susannah Calahan, who details her terrifying story first-hand in her 2012 book Brain on Fire: My Month of Madness.

What caused these frightening symptoms?  The answer was a disease that had only been discovered a few years earlier (right here at Penn!): NMDAR encephalitis.  There are four main phases of the disorder.  In the prodromal phase, many but not all patients experience a flu-like illness for up to 3 weeks.  The psychotic phase is accompanied by delusions, auditory and visual hallucinations, depression, paranoia, agitation, and insomnia.  At this stage, most patients are taken to the hospital, where around 40% are misdiagnosed as having a psychiatric disorder like schizophrenia.  As this phase progresses, seizures are very common (although they can occur at any time throughout the illness), as well as involuntary muscle movements like lip-smacking or grimacing, catatonia (muscular rigidity and mental stupor), impaired attention, and memory loss.  The next phase is unresponsiveness, which includes symptoms like the inability to speak, loss of voluntary movement, and sometimes abnormal muscle contractions that cause involuntary writhing movements.  The last phase is the hyperkinetic phase and is characterized by instability of involuntary bodily functions such as breathing, blood pressure, heartbeat, and temperature.  Many patients who breathe too slowly often need to be placed on a ventilator at this stage. The decline to ventilator support can progress very rapidly after several weeks in the psychotic stage, and ultimately patients can be hospitalized for several months with the disease1–3.

What does NMDAR encephalitis actually mean?  This disease is an autoimmune disorder, meaning the body’s immune system mistakenly attacks its own healthy cells.  Normally the body identifies foreign substances by making something called an antibody that recognizes a unique part of the invader, thus targeting it for attack and destruction.  In NMDA encephalitis though, the immune system attacks the brain (that’s where to term encephalitis comes from), specifically a type of neurotransmitter receptor called an NMDA receptor (NMDAR).  These receptors bind the neurotransmitter glutamate, and play an important role in learning, memory, cognition, and behavior.  In fact, the symptoms of NMDAR encephalitis resemble those caused by drugs such as ketamine or PCP that prevent the activation of NMDARs.  For instance, at low doses ketamine and PCP cause paranoia, false perceptions, and impaired attention (like the early stages of NMDAR encephalitis), and at higher doses these drugs cause psychosis, agitation, memory and motor disturbances, and eventually unresponsiveness, catatonia, and coma2.  Several mechanisms have been proposed to explain the symptoms caused by antibodies targeting the NMDAR, but most of the evidence seems to support the idea that the receptors get removed from the cell surface and internalized.  For instance, experiments in the laboratory demonstrate that when animal neurons grown in a dish are exposed to patients’ anti-NMDAR antibodies, the number of NMDARs on the cell surface decreases as the amount of antibodies increase.  When the antibodies are removed, the number of NMDAR receptors on the cell surface returns to baseline within 4 days1.

It’s easy to remove antibodies in a dish, but how do doctors get the body to stop producing antibodies against itself?  Step one is identifying what triggers antibody production in the first case.  Interestingly, NMDAR encephalitis predominantly affects women, and ovarian teratomas (a type of tumor made up of multiple types of tissues, which can include nervous system tissue) are responsible for 50% of cases in young women2.  In patients who have some sort of tumor, removal improves symptoms in 75% of cases.  Interestingly, herpes simplex virus can also cause encephalitis (inflammation of the brain), and about 20% of these patients also develop antibodies against NMDAR2.  Treatment consists of immunotherapy: corticosteroids, IV infusion of immunoglobulins, and/or plasma exchange1, however patients with a viral trigger tend to be less responsive to treatment than those with a teratoma trigger or the 50% of patients with an unknown trigger2.  Once treatments begin improvements in symptoms start within a few weeks, though return to baseline functioning can take up to three years.  Rehabilitation is required for many patients after they leave the hospital.  Deficits in attention, memory, and executive function may linger for years, but luckily over 75% of patients with the disease recover to at or near baseline neurological functioning1.

Doctors and scientists hope to develop new treatments involving immunotherapy combined with small molecules that are able to access the brain to directly combat the effects of anti-NMDAR antibodies, ideally leading to faster control of symptoms and shorter recovery time2.  A brand new animal model of the disease was just described last week that will hopefully lead to more discoveries about how the disease is triggered and potential new therapies4.  And with increased awareness of autoimmune disorders against the brain, doctors will be able to more quickly correctly diagnose patients with this illness and get them the treatment they need.

References:

  1. Venkatesan, A. & Adatia, K. Anti-NMDA-Receptor Encephalitis: From Bench to Clinic. ACS Chem. Neurosci. 8, 2586–2595 (2017).
  2. Dalmau, J. NMDA receptor encephalitis and other antibody-mediated disorders of the synapse: The 2016 Cotzias Lecture. Neurology 87, 2471–2482 (2016).
  3. Dalmau, J. et al. Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies. Lancet Neurol. 7, 1091–1098 (2008).
  4. Jones, B. E. et al. Anti-NMDA receptor encephalitis in mice induced by active immunization with conformationally-stabilized holoreceptors. bioRxiv 467902 (2018). doi:10.1101/467902

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When You Need Help with Your Memory Loss

When You Need Help with Your Memory Loss

January -8-2020 | Mari Wagner Davis, RN

I have been a nurse since 1985. I was working as a nurse case manager when I was at work in December 2017. A co-worker, who I have worked with for years, noticed I was acting strange- laughing inappropriately, busy but not really doing work.  We shared an office and she took my keys out of my purse because I had talked about going home and that idea scared her.

Memory Loss Mari Warger Davis January 2020 500x419 - When You Need Help with Your Memory LossWhat neither of us knew at the time was that she saved my life. Because I couldn’t find my keys, I went back to the unit I worked on, shortly after that I had a seizure. I was hospitalized and after a few days of testing, I was diagnosed with anti-NMDAR encephalitis. Anti-NMDAR stands for anti-N- methyl-D- asparate receptor encephalitis. It is an autoimmune disease where the body creates antibodies against the NMDA receptors in the brain. The antibodies disrupt normal brain signaling and can cause seizures, memory problems, cognitive issues, speech disorders, neuropsychiatric symptoms as well as other symptoms.

I was treated with steroids, IVIG and plasmapheresis. I had inpatient and day therapy rehabilitation. I also did a computer cognitive therapy program. Recovery can be slow. Many patients with autoimmune encephalitis are left with memory problems, cognitive deficits and have problems in situations that are cognitively demanding. Memory continues to be an issue since my diagnosis with AE.

 

I have a calendar and use my phone to keep track of my schedule but what I have found is that people treat me as I was before, that would be great if I had my normal memory, but I don’t. That is part of the problem with having an invisible disability. If you didn’t know what happened to me, I look and can for the most part act “normal”- whatever that is. But in truth, I have trouble remembering previous conversations.

What was easy for me in the past takes far more of my energy than it used to. I find it is difficult to follow a conversation in a group. There is too much information for me to take in at one time. Sometimes in a conversation with several people, it exhausts me, I lose my place, and end up not trying to carry on and be a part of the conversation- it’s just too much for my brain to process. I just give up. I may experience “flooding” where my brain cannot take in so much information at one time.  People in the conversation may notice I get quiet.  They may think that I disagree with them or don’t like the topic.  In truth, I may have lost track of the conversation and have no idea what the topic is.

Things that were easy for me in the past are difficult for me now. For example, recently my sister sent me a text asking me to bring two side dishes to a party to celebrate my Dad’s birthday, I don’t remember having a conversation about it at all. I looked back at my texts and found a message from her. In the past, this would be something I would remember and follow up on. Now, I have no memory of the subject at all.

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There are ways for others to help those of us with Autoimmune Encephalitis become more comfortable in these situations. So, for family members and friends of those with AE these tips may be helpful.

1. When you start a conversation about plans previously made, talk about the previous discussion that was held.  Help by cueing the person. For example, you may say “I messaged you before about dinner on Friday the 12th and wanted to make sure you were still available.”  That reassures me that I did have a conversation about it in the past and reminds me of the topic and date.  It also allows me a chance to confirm it.

2.  If you are asking me to do something, refer back to what had previously happened and provide contact information if you have it, for example, “Last year for the block party you scheduled the Police department to come and register bikes, can you do that again this year? if you can, I will send you the contact information, Let me know by Monday the 8th”

3. If we have made plans, contact me several days or up to a week before to confirm, for example, “I have on my calendar that we were going to the movies on Friday the 10th at 7 pm, will that still work for you?”

4. If we are going someplace where there will be people I may have only met once before, take the time to reintroduce me to them. My husband will usually tell me, “you met them before at the game, but this is John and Mary”

5. When my husband leaves for work and I am still asleep, he leaves a note telling me that he left for work. He knows that if I am not aware, I won’t be sure of the day of the week and may look around the house for him and be anxious about where he is.

Letting family and loved ones know that incorporating these types of supports helps us remain social and successful is truly appreciated.  It can keep us from becoming overwhelmed or “shutting down” and allows us to participate fully with more confidence. Trying to stay socially involved is important. Taking a little extra time to do these things will help us to recall previous discussions and allow us to feel more comfortable.

As time goes on, and friends and family learn the types of difficulties their loved one is experiencing, it will be easier to anticipate situations that they may have trouble managing.   Coming up with solutions by troubleshooting these situations is the best support you can provide.

 

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It is the Season When We Give Thanks

It is the Season When We Give Thanks

Barbara Layt Vujaklija | November 28-2019

No matter the origins in your part of the world, during the autumn or early winter there is usually some sort of harvest or thanksgiving festival. A time for people to share the earth’s bounty with friends and family and gather together to renew and strengthen the bonds we share.

Growing up in England I remember being paraded from school across the village street to the local church which was decked out with bales of sweet-smelling hay, turnips, parsnips, carrots and all manner of other foodstuffs (both fresh and canned or purchased), plus magnificent late flowering plants. The church was filled with the earth’s splendor and the folk of the village. We elementary school children dressed in our best took our place in the choir stalls. After the sermon, we were to sing a few songs that expressed everyone’s thanks for the bounty before us. The foodstuff was later distributed to the poor of the village.

Since coming to live in America at the age of 20, I have discovered a new way of giving thanks to the earth’s bounty and family and friends.  I have found the customs of Thanksgiving here in the USA to be comforting and enriching.

What am I, as someone with Autoimmune Encephalitis, thankful for?

I am thankful for my improving health, and for my family who has stayed beside me during my trials. I am especially thankful for my son-in-law and daughter who came to live with us to be my caregiver. Thanks to Toys-for-Tots and local food drives, I still have the satisfaction of helping those less fortunate than myself.

Here, at the International Autoimmune Encephalitis Society, we asked members what they were thankful for.  Their responses are below:

Thanks for understanding

For this Thanksgiving, I am a warrior who is thankful for my husband, my family, my neighbors, and IAES. These people know that despite having AE I still have a lot of knowledge and am an intelligent woman.

I am so thankful for everyone at the International Autoimmune Encephalitis Society, they help me to feel that I will make it through this, my husband who has learned to deal with my poor memory, my family who supports me, our awesome neighbours and everyone in this world who has learned in one way or another that disabled people have so much to offer.   – Mari Wagner Davis

 Thanks for loving and listening

I am thankful to have a loving kind man that has been with me every step of the way and helps me cope every day. I am also thankful for my best friend who listens and talks to me about anything and whatever I need.  – Katherine Crow

Thanks for life and a new me

Life ?? Thankful to still be alive and getting the chance at the new me. We all know the outcome could always be worse with this disease. Happy Thanksgiving.    -Dayna Burns Rudy Munoz

Thanks to the Lord

For Thanksgiving, I want to say I am very thankful for the Lord being present with me and carrying me through a three year battle with AE. Especially when I was hallucinating in the psychiatric hospital, thinking everyone was plotting to kill me. He gave me a peace that I would survive and be OK. And I was.
-Wayne L. Wall

Thanks for hope, life, love

I am thankful that despite everything I can still have some semblance of a normal life, that my husband still loves me and cares for me despite everything, and I still have hope, love, life, my children, husband and the best of my friends and family in my life. I’m thankful that the chaff has been able to be cut away, so I can enjoy and wholeheartedly love those who are genuine in my life.
-Cathy Bolton

Life and smiles

I am thankful that my son did not die when he first got sick. He was very close. I am thankful that he was given a cheerful, strong and enduring spirit that touches the lives of so many he knows. I am thankful for his smiles and that he always compliments people and wants to care for them. I am thankful for the opportunity to enjoy the gift of every day and the ability to live a full life with him. Happy Thanksgiving!
Lora Strange

This group

I’m thankful for finding this group because many of my questions have been answered here. Also because I don’t feel like a strange person anymore.
Michelle M. Caamaño

Caregivers

I’m thankful for my husband and son who are also my caregivers.
Amy Underwood-Crossley

 

Make a Comment below to share what you are Thankful for

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Through my eyes: Watching my Dad’s AE journey

Through my eyes: Watching my Dad’s AE journey

November-13-2019 | Ryan J Dinero

Ryan J Dinero father died of AE 1 e1573603671514 375x500 - Through my eyes: Watching my Dad’s AE journeyIt’s been a little over two years since I got the phone call from my Mom. I was a sophomore in college and was entirely unprepared for the conversation that was to follow. She explained that my dad had a minor seizure while at work and was being transported via ambulance to the hospital. This news came as a total surprise to me because my dad was in seemingly perfect health – no drinking, no smoking, and he exercised frequently. While I could tell that my mom was obviously shaken, in the moments after that phone call I was able to convince myself that everything was fine, that he would get a prescription and return home the same day unscathed. Like many others who have experienced the grueling battle against autoimmune encephalitis I couldn’t have been more wrong about what was to follow. So began my dad’s battle with the disease.

Its hard to explain to people who haven’t ever heard of AE that it’s not a simple disease to diagnose. In my dad’s case, it took two separate stints in the hospital to finally get an accurate diagnosis. After the first incident he was admitted into the ICU where he lost control of his body almost entirely for several days until the steroid medications began to reduce the swelling in his brain. The neurologists at our local hospital were perplexed as to what the cause of his symptoms could be. They ran a series of tests that ruled out everything from a stroke, a bacterial infection, as well as a multitude of other conditions that I can’t begin to remember. After two weeks in the hospital his facilities began to come back as the medicine did its job, and we stayed hopeful that it was somehow an isolated incident not to be repeated. He was released and began resting at the house as he recovered. It couldn’t have been more than two weeks later that I was woken up by my mom’s screaming in the early hours of the morning. As I ran the stairs I prepared myself for what I was about to see, filled with adrenaline and terror that even two years later keeps me awake in the night. When I reached the living room, I discovered my Dad on the couch having a full-on seizure, something that I had only previously seen in movies. Knowing little to nothing about what strategies to employ to help, I opted to pick up the phone and dial 911, and just as I heard the phone ringing I heard my Dad’s voice from the other room express that the seizure was over and that he felt fine. I hesitantly told the operator that things were fine, spent a few minutes making sure my Dad was responsive and lucid, and somehow returned to sleep. Less than an hour later I was awoken by the same screams, and this time I knew that another hospital visit was imminent. Thankfully, the doctors explained that a small reduction in the seizure medication was to blame and they sent us home that same day.

Over the next month my Dad returned to his normal self slowly but surely. His previous hospital stays were characterized by extremely abnormal behavior that the doctors attributed to his brain swelling. Things that he would have normally never said or done became commonplace while he was in the hospital. He forgot names, places, and other details. After the doctors adjusted his medicine he became more lucid. He was able to laugh at jokes and even bust out some of his own signature humor. While things were obviously different, namely his strength and ability to remain energetic throughout the day, things felt normal. They remained that way until Christmas Day, when another minor seizure sent us to the Houston Medical Center. The hospital was almost completely understaffed and made for a less than ideal celebration of Christmas. This visit was the most serious of the many that we experienced, as we called Houston Methodist our second home for over a month while doctors scrambled to properly diagnose my Dad’s symptoms. The team of neurologists there were incredible given the circumstances and after weeks of uncertainty and guessing, they were able to finally conclude that my Dad was suffering from autoimmune encephalitis caused by an antibody that was unknown.

Ryan J Dinero father died of AE 2 500x333 - Through my eyes: Watching my Dad’s AE journeyFor my family, a diagnosis was everything we had wanted; we could finally begin a treatment plan that was focused, instead of one that had no timeline or endgame in sight. By this time however, my Dad’s health had seriously taken a toll. As a result of losing his ability to walk he was bedridden for most of the month. It was also around this time in the hospital that something seemed to be off with him mentally, he was saying things that weren’t necessarily true and overall had developed a very bad attitude that led to frequent outbursts.

After another lengthy stint at a physical therapy center, Dad was finally able to return home. My mom worked tirelessly with him every day on his occupational therapy, encouraging him and try and stay positive. Things were okay again for a few months, but eventually took a dark turn as my Dad began having suicidal thoughts and began exhibiting symptoms of psychosis, leading him to believe things about the world that weren’t true. He was constantly worried about money and convinced himself that the police were looking for him and had a warrant for his arrest. He left the physical therapy facility in February and in April he attempted to take his life for the first time. Thankfully he was unsuccessful, but he did serious damage to his arm as a result and had to be admitted to a psychiatric hospital for a few weeks and had to undergo more physical therapy for his arm.

It was during his stint in the psychiatric hospital that I first reached out to the folks at the International Autoimmune Encephalitis Society where I received tons of resources about how to get Dad released from the psychiatric unit. Once he was released, it became apparent that IVIG treatments were the right treatment, but we were denied a total of 3 times by our insurance provider on the grounds that the treatment was not FDA approved and did not actually treat AE. Thanks to the hours of phone conversation with members of the IAES, I was able to eventually overturn the decision and Dad began receiving IVIG treatments shortly after. When we returned home, I could tell that he was tired of living, that his spirit was drained, and he was ready to give up.

Despite utilizing every available resource at our disposal, he succeeded in taking his life in late September of 2018, just three days before his 51st birthday.

It’s hard to describe my thoughts and feelings throughout the past two years because the only way I can think of it is as a never-ending roller coaster, constantly up and down with no end in sight, until there finally was one.

Ryan J Dinero Father Johnny 9 20 2018 500x375 - Through my eyes: Watching my Dad’s AE journeyI would be failing to honor my Dad’s legacy if I failed to mention that he was an incredible man, the best man I think I’ll ever have the pleasure of knowing. That said, for me, the experience was agonizing and easily the worst thing I’ve ever had to endure. It felt like some days would never end, and it was exhausting trying to rationalize with someone’s who’s brain would not let them experience reality the way it ought to. The countless hours spent sleeping on uncomfortable hospital furniture, the excruciating hours spent at physical therapy being a cheerleader, and the anxiety of waiting for the doctor to step in the room are just a few poignant memories that come to mind when I think about that period of my life. Some of the happier memories involve performing daily miracles: like making my Dad laugh at a dumb joke or getting him excited enough about The Beatles to get him to sing along in the car.

 

This whole experience has shaped me and impacted me in ways that I cannot begin to describe. While my Dad’s battle with AE ended almost a year ago on September 20th, I continue to wage my own battle every day dealing with the repercussions of this deadly disease. It’s still hard to get out of bed some days because everything is a reminder that I’m here and he isn’t. I can’t help but think about what I could have done different, how I could have made his life a little better than I tried. I think these feelings are natural now that he’s gone. As much as I try to not let myself dwell on them they are always in the back of my mind. The whole-time Dad was sick I was in school three hours away, so many weekends were spent back home at the side of a hospital bed while I struggled through my sophomore and junior years of college. I somehow managed to stay in school and keep my grades up, and I’m looking forward to graduating this coming year.

For the first time in a very long time I can confidently say that I am genuinely happy and hope that by writing a little bit of my story that someone out there, whether it be a caretaker, a friend, a family member, or even someone who hasn’t heard of AE would be encouraged and inspired.

To all the caretakers out there – keep going and don’t let up. Use the resources that IAES has to provide the best care to your loved one. I can confidently say that if it weren’t for this organization my Dad would never have received IVIG treatments, which were instrumental in his recovery.

If you’re reading this, and can relate in any way, I’d love to hear from you about your experience. Much love to everyone.

Ryan

Contact Ryan at ryandinero@icloud.com

 

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

 

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When the judge has read the book…

When the judge has read the book…

May 22, 2019 | Julie Ann Fetch

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Finally, some good news to share with everyone.

I just got a favorable ruling from Social Security Disability that I meet their criteria due to my having anti-NMDAr Encephalitis and other autoimmune conditions.I initially applied in 2015 and after a long battle with appeals and 2 hearings, I won!

Here are my take home messages:

1.     Apply for yourself, have someone do it for you, or apply for your loved one as soon as there is a diagnosis.

2.     Report all medical conditions, not just autoimmune encephalitis. Surprisingly, my case was approved more for my Crohn’s Disease and other autoimmune conditions than the anti-NMDAr, but all of these conditions were complicating each other.

3.     Don’t give up if you are at first denied. Appeal. Hire an attorney that only takes a small percentage and only if you win. I think mine only made $6000 from my case.

4.     Make sure your doctors write in the record the things you tell them about. Like fatigue, confusion, anxiety, depression, slurred speech, vision issues, etc. and give them exact examples of how it affects your everyday life. Better yet, write your list of symptoms out and ask/make them file it in your medical record. Or, track a “typical day” for a week or longer and show it your doctors. 

5.     Have others who live with you or observe you, tell the doctors what they see with their own eyes or ask them to write it down so the doctor can put it in your record.

6.     The biggest thing I learned in this process, is that they don’t award disability based on just a diagnosis. It has to be in your medical record how it is affecting you day to day to the point that you “couldn’t sort pencils” as my attorney always said. As we all know, before encephalitis is properly diagnosed and appropriately treated, “sorting pencils” is probably not even possible. (It still may not even be possible during recovery either for that matter!)

Keep up the good fight.

Oh, and my judge read the book “Brain in Fire”, so awareness is spreading everywhere!

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 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.


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The Invisible Disease

The Invisible Disease

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. 

 

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).

 

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.

72f61a 73cc861240514b5280606b4242a53cc9~mv2 - The Invisible Disease

 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. 

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.

Through My Struggle came Tremendous Strength. Never Give Up!

Through My Struggle came Tremendous Strength. Never Give Up!

December 5, 2018 | Colleen O’Neal

 

Six years ago, I couldn’t turn on the faucet

I distinctly remember standing in front of the sink, wanting a drink of water and not being able to turn on the faucet. I could certainly reach it, and the faucet was functional, but I still failed to turn it on. I stood staring at it trying to make the connection between the long metal spout and the glass in my hand. I have no idea how long I stood there, but eventually, I made my way back to bed only to have a startling and terrifying moment of clarity about what had just happened.

Six years ago, I spent three months in bed

In between doctors’ appointments, tests, more tests, and more doctors’ appointments, I continued to deteriorate. I was unable to function due to the dizziness and unable to walk without assistance. I could only stand for short periods, and any exertion exponentially rose my blood pressure to dangerous levels. My numbness extended to parts of my arms, legs, and shoulder blades. I had strange sensations of water in my scalp, and my pupils were in a constant state of dilation. I would regularly feel like my skin was on fire and would sweat profusely with no warning. Continued trips to the ER yielded nothing more than a diagnosis of an ear infection or a virus. They weren’t listening, and I was dying. A subsequent MRI showed two benign cysts in my brain. One in the left ventricle and one at the base of my eustachian tube. Despite all of my symptoms, the doctors were convinced the cyst in my eustachian tube was the cause for all of my symptoms and surgery would be scheduled in two weeks. The trips to the ER had become fruitless, as the doctors felt they had their working diagnosis. We were alone; forced to wait it out. In those two weeks, my naps moved from a couple of hours to a half a day, to sixteen or more hours a day, only to be awoken, gasping for air. My husband, not wanting to disturb my rest, would sleep in the guest bedroom but would hesitate at my closed bedroom door in the morning not knowing, when he opened it if I would be alive.

Following the surgery, I felt much better. In retrospect, it was the steroids I had been administered before the surgery. Two days later I plummeted hard, and the search began again.

Six years ago, a doctor called me a liar

One of the most frustrating aspects of this disorder is the quickness of the medical community to assume it’s a mental issue and throw Xanax around like a party favor. If you don’t fit into a nice, neat box, you must be crazy or a liar and ultimately your dismissed. I spent days and days in the hospital only to be released with a “cookie cutter” diagnosis or none at all. I’ve been accused of trying to get disability and basically told I was stressed so go home “little, feeble women” and bake a cake for your husband. When I visited yet another neurologist, I questioned her diagnosis of migraines. She leaned into me, lowered her voice to a whisper, pointed to herself and said in an extremely condescending voice, “I went to school.”

Six years ago, I looked ok

Looking “ok” on the outside doesn’t mean things are ok on the inside. This was and still is a difficult concept for many to understand, and those who suffer from a variety of autoimmune diseases deal with this daily.  Although I was able to recover some, for three years I suffered from a plethora of symptoms including widespread pain, dizziness, weakness, verbal issues, numbness, confusion, comprehension difficulties, vision changes, and a constant “flu-like” state. This was worsened by feelings of hopelessness.  Without a proper diagnosis, I started to think the doctors were right and I was crazy. Many members of my family never said it, but I know they were thinking the same thing. Many co-workers, and especially my supervisor, began to treat me like I had done something wrong. In their eyes, I was the lump trying to beat the system. They only spoke to me when it was absolutely necessary and did their best to exclude me from anything that could help forward my career. I was the one that everybody whispered about. I suffered in silence and struggled through every day never letting anyone know how I felt, lest they use it against me.

Four years ago, it was time for a change

By this time, I was convinced that no one other than my husband and children were going to advocate for me. However, it impacted us all, and we all felt helpless. I had been to every local neurologist, only to be rejected for further treatment because I dared to question them and refused to be dismissed. My primary physician was very sympathetic but, without a referral to a neurologist, her hands were tied. Therefore, I began to research my symptoms at every opportunity. I was dedicated to determining what was destroying my mind and body. I began to realize that I wouldn’t be able to continue in my current, very physical profession if my symptoms didn’t improve, or worse, if I began to backslide to where I was two years earlier. I was already hiding symptoms from my supervisor at work for fear of reprisal. I would claim something benign like a dentist or eye appointment so I could go home and attempt to scream away the pain. At the office, I would wait for the hallway to clear before leaving my office so no one would see the wobble in my walk as I tried to maintain my balance, or see the deep furrow in my brow as I tried to combat the double vision.

Before I got sick, I had decided I was going to work on my degree but was only one year into the process.  I didn’t necessarily need the degree in my current position, but I wanted it as a personal accomplishment for myself. Now it had turned into a necessity. Without a diagnosis, there would be no cure. Without a cure, I had no idea how long I could keep my job. It was, without a doubt, time to broaden my possibilities but how was I going to do this if I couldn’t hold a decent conversation or remember what I had just done the hour before?

Two Years Ago, I Got a Diagnosis

For months, I went down every rabbit hole imaginable trying to discover what this was, but kept running into dead ends. Then, one day I came across Hashimoto’s encephalopathy. Oh my God- this was it! Every symptom fit. The stroke-like symptoms, the cognitive impairment, the psychiatric symptoms, the tremors and so much more. I printed out a stack of information and drove to my doctors’ office with a renewed sense of purpose. She agreed it was a distinct possibility but still ran into dead ends when referring me to the any of the local neurologists. Not to be deterred and armed with new ammunition, I began to research facilities that specialized in this disorder and found one 350 miles away. The referral went in, and within a couple of weeks, I received a call for an appointment.

My first appointment lasted over two hours consisting of neurological exams, psychological exams, physical exams, and a multitude of questions. In the end, my neurologist said, “I’m not sure yet what this is, but we’re going to figure it out together.” Together? That meant I had a voice! All I could do was cry. I wasn’t dismissed, I didn’t get the “eye roll,” I didn’t get a cookie cutter diagnosis, and most importantly, I was believed!

I was admitted into the hospital for three days, placed on IV steroids and underwent more tests, including an MRI, spinal tap and a multitude of blood work. Subsequently, I was diagnosed with Steroid Responsive Autoimmune Encephalopathy and placed on immunosuppressants and other stabilizing medications. I was on my way. There was a path, and I had hope!

May 2018, I Graduated

Due to the nature of my job, I never knew where I might be or for how long so all of my classes had to be online. This, in itself, was already challenging. I figured out rather quickly that my brain didn’t function very well in the evening. Within 30 minutes of computer work, I was already having to read over what I just read several times and 30 more minutes brought on the double vision. The process of reading, comprehending, and delivering a term paper was nothing less than agonizing while I waited for my brain to wake up. It was like being in a constant dream state while your awake but you have to get the job done while looking through the fog and walking past the monsters.  Add to this severe headaches, concentration and cognitive issues, and my already challenging effort became a monumental hot mess! I had to formulate a plan that I could live with that could balance my work and school.

Treat it like a job. That was my plan. It couldn’t be an afterthought or when I thought I had time, it had to be scheduled. If my brain didn’t work at 5 pm, then my schedule would begin at 4 am. So, every morning thereafter began at 4 am with a cup of coffee and a book.

As with any job, you look for ways to improve. If I was going to treat my disease like a job, I had to find ways to improve my circumstances. One of the things I struggled with daily was unrelenting pain and had read that exercise helped. I wasn’t sure how trading muscle pain for nerve pain would work, but I was willing to give it a try, and I’m glad I did. Just the act of stretching gave immediate pain relief. I hired a trainer to help with balance and strength and continued to see improvements daily.

Six years ago, I couldn’t turn on a faucet, but there I stood, having refused to give up, standing side by side with my fellow graduates and receiving the distinction of Magna cum Laude.

 

I still have “those” days, and much of life is still a struggle. However, I chose to work around and work through rather than let this disease win. I chose not to be intimidated by arrogant doctors and to ask the tough questions. I chose to take charge of my health and to be my own best advocate.

The last six years have been a tremendous struggle, but I wouldn’t change a thing. With my family beside me, it showed me a strength in myself I never imagined. Now, with a deep understanding of this disease, I can advocate for others and be the voice for those who have none.

Six years ago, this disease changed my life forever but through struggle came tremendous strength. Don’t let your “faucet” be your end but rather your beginning. Turn your struggle into strength and never, never, ever give up.

 


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.

Meet the IAES Admins ~ Series Introducing Jo-Anne Villar

Meet the IAES Admins ~ Series Introducing Jo-Anne Villar

November 6, 2018 | Jo-Anne Villar

 

Jo-Anne Villar with her daughter Jordan

Each month the IAES Blog is featuring one of our volunteer Administrators working in the IAES Educational Facebook Support Group.  The educational support forum is specifically designed for people who have received a confirmed diagnosis of Autoimmune Encephalitis, their loved ones and caregivers.  It is the only educational support group of its kind.  Members receive one on one support, educational training in AE based on the research published in the field by top experts, advocacy in addressing their specific challenges or road blocks to reach the best treatment plan and outcome, emotional and personal support by members of our ‘AE Family’ who walk this walk.

Each Blog in the series will introduce you to one of our Admins and tell you a little bit about what they do in the group and what they do and are responsible for “behind the scenes”.  Some of our Admins work full time and contribute 7 days a week while others donate their time and talents a few hours a day or as they can.  The roles they hold are diverse from talking to each individual who asks to join the support group to answering posted questions, helping members understand or locate research on a specific topic, working with insurance coverage/financial discounted programs/denials of treatment to crisis management in varying situations. Some take on additional hats writing and editing blogs and THE HERD newsletter where we bring you up to date news.  An Admin may assist members privately which can involve a team of Admin being assigned to a case that can at times run weeks or months until resolved.  Each Admin brings their own talents and viewpoints to the team.  If you think you would like to become an admin e-mail admin@autoimmuneencephalitis.net to request an application.

This month we are spotlighting Jo-Anne Villar


I am a mom of a now 15 year old daughter Jordan, who has been battling Autoimmune Encephalitis for at least 3 years. I think I’m like most moms of children with AE, we joined IAES group, to be able to learn, share, and connect with others. We want to feel that we are not alone. I joined IAES around 2015 in my frantic search to figure out for myself what was happening to my daughter.

I now volunteer for IAES helping guide and comfort members that are dealing with AE themselves or caring for someone who is. I share research pertaining to their circumstance, or my experience from my daughter’s journey, or comfort and try to help them find strength.

 

I am a mom to 5 kids that my husband and I are raising. We have a full house with his two sons (11 and 17), my son (16)and daughter (15) and our 8 year old daughter. I’m a wife to a dedicated husband for over a year now, but we have lived as a family for 11 years. We have a very busy household like most with 7 members. We all help care for each other, especially caring for Jordan. To my amazement, we developed a protocol when she has an emergency. I realized one day that they all know what to do in an emergency. When a seizure occurs one will alert, another turn her to her side and keep her safe, another will get her medicine bag, another will time, another will have a phone ready to call 911. Even my 8 year old has been helping since she was six. I am Business Office Manager and Insurance Biller for a skilled nursing and rehab facility. I am determined that every patient should understand their condition, their treatment, and their insurance coverage. I advice patients of the services they are getting in the nursing home and explain the extent of their coverage and their financial responsibility. I also communicate with patient insurance companies to make sure that the covered services we provide are authorized and paid for. I care that our patients get the services they need. I care that our patients know what their insurance will cover. I care that the insurance will pay for what they authorize.

I have been a patient advocate for over 20 years. It has definitely helped me advocate for my daughter and my family. My profession has given me the strength and experience to be a case manager for my family. I was a case manager and caregiver for my mother in law when she battled breast cancer. I was a case manager and caregiver for my mother when she battled leiomyosarcoma. Now, I am my daughter’s caregiver and case manager. I truly believe that our experiences lead us to become who we are meant to be.

 Jordan feeling at her better 6 weeks after Rituxan treatment.  She did have a seizure 2 days before this picture was taken, but then was seizure free for 3 months.  Jordan has been battling her AE for 3 years. 


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.

Why I Am So Thankful this Thanksgiving ~Sydni’s Story

Why I Am So Thankful this Thanksgiving ~Sydni’s Story

 

November 14, 2018 | Jamie Dobson

I was asked to share my daughter’s story.  I’m not much of a writer, but I thought that I would give it a try.  Sydni is a 16 year old who dreams of being a paramedic.  She has always been the one that is willing to help and has such a compassionate heart, so no one that knows her is surprised by this.  She is the fourth of seven kids, 2 boys and 5 girls.  She was a full term, scheduled C-section with no complications.  She was the smallest of all 7 kids, but was healthy.  When she was 3, we noticed that sometimes, her pupils were different sizes.  Not just a little different, sometimes very different.  We took her to the pediatrician, and they referred us to a pediatric ophthalmologist.  He couldn’t find anything physically wrong, so he wanted to follow up in a few months to see if there were any changes.  A couple of weeks later, I was called home from work because she was saying that she couldn’t see.  By the time that I got home, she was able to see some, but not very well.  We took her back to the ophthalmologist that day.  He ordered CT scans of her head and abdomen.  When everything came back normal, he referred us to a neurologist.  When we saw the neurologist, he made me feel better about everything.  He assured us that everything was okay, “We see this all of the time, she will outgrow it”.

Fast forward a few months.  One night, Sydni started complaining that her chest was hurting.  When we went to the pediatrician, they said based on her history, let’s send her to a cardiologist. Again, “we see this all of the time, she will outgrow it”.  I felt a little better after hearing it this time, but not much.  Her diagnosis was Postural Orthostatic Tachycardia Syndrome, or POTS.  We were told that this usually isn’t seen until the early teens, but she would outgrow it.  Treatment was to increase water and salt intake.

After a few more months and several more trips to see Dr. Steve (our pediatrician) for a variety of things, he was able to give us a diagnosis.  Dysautonomia.  I have never heard of Dysautonomia!  Twelve years ago, there wasn’t much to be found about Dysautonomia.  I couldn’t find much about it on the internet, but I did find one website that had a lot of information.  It was the Dysautonomia Youth Network of America .  Of the 30+ symptoms that they list on the website, Sydni had all but a few.  It wasn’t a good diagnosis, but at least we found out what was going on.  For the most part, she learned how to deal with things on her own.  For example, she has thermoregulatory issues, so she struggles with maintaining her body temperature.  She doesn’t sweat to cool herself.  She learned to stop playing and find a cool place when she needed to.

Dr. Steve contacted Vanderbilt to try to get her into a study that they we doing.  Since this wasn’t usually seen until the teens, she was only 4, they said that she was too young and wouldn’t accept her.  She started seeing several specialists, and lots of visits to the pediatrician.  Dr. Steve is like family now!  Sydni has grown up learning how to live with her condition; it hasn’t held her back in too many ways.  Some days, it has been obvious how bad she was feeling, but she still managed to keep a smile on her face.

Fast forward again to Sunday, February 12, 2017.  The kids spend every other weekend with their Mom.  This was her weekend.  I picked them up from their Mom’s and took them home.  After getting the little guys to bed, Sydni and I went to the store (my oldest son and second oldest daughter were there).  After we left the grocery store, we went to Walmart.  Sydni needed some things for school.  As we were walking across the parking lot, she was telling me what she needed.  When we got inside, she looked at me and said, “Why are we here”?  I thought that she was teasing me, so I said, “You know why we are here”.  Her expression changed and she asked, “What did we come to get?”, and then she started crying.  That is when I knew she wasn’t teasing.  We left Walmart and headed for the hospital.  Home was between us and the hospital, so I called the older kids at home and told them to meet me in the driveway.  I talked to Sydni all of the way home and it was obvious that something was wrong.  When we got to the house, she didn’t recognize her siblings.  She was admitted when we got to the hospital.  After X-rays, CT Scans, an MRI, lumbar puncture and tons of blood work, it was determined that she had a conversion disorder and started seeing a Psychologist in house. 

I had never heard that term, but I wasn’t convinced.  Her memory hadn’t returned and was much worse than we initially thought.  She couldn’t remember holidays, vacations, people, events, etc.  She spent a total of 5 days in the hospital.  A few days after discharge, I received a call from the neurologist’s office.  Some of the labs came back and he had a new diagnosis, Hashimoto’s Encephalopathy (HE).  One of my other daughters has Hashimoto’s Disease (hypothyroidism), so I’m thinking, okay, we can deal with this, take some thyroid medicine and she will be okay.  It turns out, I thought wrong.  The neurologist said that it is also referred to as steroid responsive encephalopathy and prescribed steroids.  Sixty mg of Prednisone.  Almost immediately, she started feeling better.   After being on the Prednisone for several days, her dose was tapered.  After only a couple of days at the lower dose, we were back at the hospital with the worse head pain that she has ever had.  She has been dealing with migraines since she was 4.  Sometimes these would keep her in bed for a day or so, but this was not like any other headache.  The pain radiated down the back of her neck.  After several rounds of the migraine cocktail, she was admitted.  She spent several days in the hospital, getting the pain under control.  By the time that she was finished with the Prednisone, she was back in the hospital.  This time, the pain was worse than the time before.  While she was in the hospital this time, the neurologist started her on 1,000 mg of solumedrol via IV.  She received infusions 3 days in a row while inpatient.  She was prescribed a 12 week course of infusions as an outpatient.  After only a couple of weeks, due to her immune system being suppressed from the steroids, she ended up admitted in the hospital with the flu.  This is how Sydni spent her summer.  In and out of the hospital, 13 times between February and September. 

During the summer, she started having new and worsening symptoms. Each time that she was in the hospital, they had a more and more difficult time starting an IV.  One visit took 8 attempts.  One of her infusions had to be run between the index and middle fingers on her right hand.  Around July, she started having some joint issues.  Her hips would dislocate, then her shoulders would dislocate.  Now all of her joints, including her jaw will dislocate.  In August, she started throwing up almost daily.  In September, she had 2 seizures.  By August, there was nothing more that they could do for her head pain.  The last time that she was admitted to the hospital, she received 5 rounds of Propofol with no relief.  The next time that we went to the ER, they sent her home and said that there was nothing else that they could do to help her head pain.

By this time, Sydni was saying that she didn’t believe that it was HE.  She believed that it was Dysautonomia.  On our follow up visits with Dr. Steve, he agreed.

The neurologist gave her a referral to the Mayo Clinic in Rochester Minnesota.  After 2 full weeks, lots of doctors and labs, the HE was ruled out.  The answer was that this is “not of organic ideology”.  They recommended that I bring her to a 3 week outpatient program that they have for pain management.  By the time that we got back from Minnesota, Sydni had lost 30 pounds.  Dr. Steve was more convinced of the Dysautonomia.  He sent her to see a GI doctor to see why she couldn’t keep food down.  Another diagnosis, gastro paresis.

Sydni had continued to the psychologist through all of this.  She agreed that a pain management program would help and gave her a referral to the FIRST Program at Cincinnati Children’s Hospital.  When we went for her evaluation, we were there for several hours and met with several different doctors.  She was accepted into the FIRST Program and spent 4 weeks in patient at Cincinnati Children’s Hospital.  The program taught her how to live with the pain that she deals with daily.

72f61a 3ec97e11d82c4f70abc43fd92e0d3c71 mv2 - Why I Am So Thankful this Thanksgiving ~Sydni's Story

She still struggles a lot, but is returning to her old self.  She has now been diagnosed with several things.  I will try to list as many as I can remember:  Dysautonomia, Ehlers Danlos Syndrome, POTS, Vasomotor Instability, Chronic Pain, Chronic Fatigue, Amplified Musculoskeletal Pain Syndrome, Gastro Paresis,

Through all of this, Sydni still always has a smile on her face.  Even when she feels her worst, she is still the first one to help someone.  I am optimistic that she will continue to get stronger and will reach her goal of being a paramedic.  She did a lot of physical therapy at the FIRST Program and learned a lot of exercises to help with her joints.  She does them daily and is learning how to eat to help with the gastro paresis.  Sydni just turned 17 and has now returned to school (after not being able to attend for 19 months) and has started socializing with her friends again.  She is an amazing kid.  She inspires me every day.

One thing that I have learned through all of this is to advocate for my kiddos.  I have done a lot of research and have learned to question the doctors when I didn’t agree or didn’t understand.  Another thing that I have learned is the value of a doctor that listens to you and is willing to do whatever he can to help your kid, and to help you to help your kid (thanks Dr. Steve!).

~ I’d like to extend my thanks to International Autoimmune Encephalitis Society for the guidance and advocacy they gave me throughout this difficult year.  IAES has helped me more than they will ever know.   Based on what IAES has done for me, I am sure that there are countless others who would say the same thing.  Their passion for helping others is obvious. I don’t know what else I could ever say but thank you.  IAES is a hero to a lot of people!


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.

The Dark side of anti-NMDAr encephalitis – A Mother’s Story

The Dark side of anti-NMDAr encephalitis – A Mother’s Story


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.

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

A Thank You Note From a Teenage Son to his Family

A Thank You Note From a Teenage Son to his Family

November 22, 2017 | Patrick Morrison

On the fourth Thursday of November, the United States celebrates Thanksgiving Day. As we ready to gather with friends and family and reflect upon this past year and the blessings it has brought, we at International Autoimmune Encephalitis Society felt that there was no greater or more poignant expression of thanks than a letter a young member wrote to his family recently.  We are grateful to Patrick for giving us permission to share his letter with all of you.

It reads: (SEE BENEATH IMAGE)

To Mom, Dad and Aine,

I cannot express how thankful I am for you guys helping me with my medical situation and with my school work such as studying, multiplication and for tests. If it were not for your perseverance to diagnose me and get me well, I would likely be in a much more troublesome state than I currently am. As much of a handicap infusions are, they also get me better and more healthy. I would like to thank Aine for chugging along through drives to Little Rock, Springfield, and Rochester. She didn’t choose to go on them, so I enjoy her support. Her support has been a pillar of stability through these harsh times. While at times my life has been a living nether, it is my one and only life and I may as well enjoy it while it lasts. Your continued support is much appreciated. From, Patrick      Nov-6-17; HE

Happy Thanksgiving to All, From IAES

Art by: AE Warrior, Julia King

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

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.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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