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A Look Back at Autoimmune Encephalitis Awareness Month

A Look Back at Autoimmune Encephalitis Awareness Month

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 4th 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 22nd 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.

Renee Sanchez WED April 1 2020 blog - A Look Back at Autoimmune Encephalitis Awareness Month

 

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

 

Paula Lee Ramirez1 - A Look Back at Autoimmune Encephalitis Awareness MonthPaula Lee Ramirez 2 - A Look Back at Autoimmune Encephalitis Awareness Month

 

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 - A Look Back at Autoimmune Encephalitis Awareness Month

 

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 - A Look Back at Autoimmune Encephalitis Awareness Month

 

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 - A Look Back at Autoimmune Encephalitis Awareness Month

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 - A Look Back at Autoimmune Encephalitis Awareness MonthGrace 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.

seal - A Look Back at Autoimmune Encephalitis Awareness Month

 

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

 

why zebra - A Look Back at Autoimmune Encephalitis Awareness Month

Living in the Moment

Living in the Moment

February-12-2020| by: Kerry Jones
Kerry Jones WED2020 2 - Living in the Moment
I am one of the lucky ones. But, in a way, I think I inadvertently helped make my own luck by contacting the Mayo Clinic when I did.
A little over two and a half years ago, my wife and I flew from our home outside of Kansas City, MO to the San Francisco Bay Area to visit family. When we returned and got off the plane in late May, my memory was almost completely gone except for a few instances from my childhood which, since I was 68 at the time, was a long, long time ago.

I started having seizures. At first, just a couple of times a day, gradually increasing to 20 or more a day. I had frequent feelings of nausea and incredible weakness (I couldn’t walk even an 8th of a block without being completely exhausted.) I contacted my physician and he tried to schedule me with the neurology department. They subsequently referred me to another neurological testing group, but scheduling with them was delayed while they were awaiting insurance approval. In retrospect, this may have been another stroke of luck, because, with my symptoms getting worse, I finally contacted the Mayo Clinic in Rochester on a Thursday or Friday in July. Apparently I used the right buzz words because they responded right away and said, “Can you come in on Monday?” Even though they were an out of network provider on my insurance plan, my wife and I jumped in the car and drove up there.

After being run through a battery of tests and being seen by several doctors, I was diagnosed with LGI1 Autoimmune Encephalitis, and placed under the care of Dr. Eoan Flanagan who began treating me with high dosage prednisone – this was about the first of August. I had my last known seizure in late October, though most of the other symptoms have persisted. At this point, I’m certainly not cured, but am adjusting to a new reality.

My memory is still very spotty. For example, as I am writing this, we are once again in California visiting family. While talking to my daughter, who just recently moved back here from Kansas City, I mentioned that I hadn’t been back to California since this had happened and that I was leery about flying even though I knew intellectually that flying had nothing to do with causing the disease.
Kerry Jones WED2020 1 500x375 - Living in the Moment
My wife gently reminded me that yes, we had flown out here just last year. I have no memory of that. I lived in this area a large portion of my life, but as we drive around, it’s like I’m in a foreign country. I don’t recognize much of anything I see. The funny thing about my memory loss, though, is that I remember people, just not places or events. I’m currently in the process of being weaned off the prednisone and replacing it with Rituxan (I had my first Rituxan treatment last August.)

I have no idea what the future will hold, whether I’ll get my memory back or not. But I’ve determined to not let that impede my enjoyment of life while it happens. It’s hard sometimes when I’m with friends or family when the conversation turns to reminiscing about a past which I can’t remember, but I know there’s nothing I can do about that. My new motto is “Live in the Moment.”

Your generous Donations allow IAES to continue our important work and save lives!
Learn more about how you can raise awareness of Autoimmune encephalitis

seal - Living in the Moment

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

why zebra - Living in the Moment

AE Awareness Month 2020

AE Awareness Month 2020

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!

 

 

Trivia card ad 1 FB - AE Awareness Month 2020

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.

 

 

 

 

 

become - AE Awareness Month 2020

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’ 4th 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.

 

 

 

the gap message 2310064 1280 - AE Awareness Month 2020

6.

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

FUNdraiser - AE Awareness Month 2020

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

Chocolate Therapy Candy Wrapper 5 9 16  x 5 3 8  - AE Awareness Month 2020

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

infogram - AE Awareness Month 2020

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

ae - AE Awareness Month 2020

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

I’ll never have a ‘normal’ Life

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.

 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

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 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.

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

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

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

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 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.

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 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.

72f61a fbbf3d6a0a974b93891ac83796dee835~mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

 

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. 

72f61a 73cc861240514b5280606b4242a53cc9~mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

 

 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. 

72f61a 8ae3ddf7f74642f98f3e76ac6fa25680~mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

 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. 

72f61a 205b1b9fdf3f40bcb2cc302dca594563 mv2 - World Encephalitis Day, February 22nd 10 Simple Ways You Can Participate

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.

A Life Well Lived, A Life Cut Short ~ In Memoriam

A Life Well Lived, A Life Cut Short ~ In Memoriam

February 13, 2019 | Jean Fowler

 

In Recognition of World Encephalitis Day, February 22nd, IAES will be publishing additional Blogs throughout February in its effort to increase raised awareness of Autoimmune Encephalitis.  Today’s story is in Memoriam of Lizzy McDaniel.  The following text will be published in the next magazine of the Poetry Project in NYC. It will include one of her poems, under this tribute, as well as her photo.

Lizzy McDaniel, exceptionally gifted poet, scholar, and French translator, passed away on June 19, 2018 at the age of 35, after a battle with antibody-negative autoimmune encephalitis, a rare form of the disease. Lizzy was an extraordinary human being whose grace, wit, and original poetic practice changed all those who came into contact with her.

Lizzy was born at the Bethesda Naval Hospital, Maryland and grew up in South Carolina. She lived for many years in New York City, where she received her Bachelor’s degree and MFA in creative writing from The New School.  In addition to being a brilliant poet, Lizzy was a singer of opera. Her knowledge of philosophy, art, and music was endlessly rich. With great sensitivity and care, she gathered history’s secrets, often weaving them into her poems. Her unique poetic voice moves with agility between the fiery and the delicate, boldness and nuance. In her poems, interiority opens onto the world, and so transforms.

Lizzy’s chapbooks include Partial View (Green Zone Editions, 2009) and Angel Applicant (2014). Her poems appeared in the literary magazines MAGGY, Gerry Mulligan, and Sal Mimeo, as well as in the anthology Like Musical Instruments: 83 Contemporary American Poets, edited by Larry Fagin and featuring photography by John Sarsgard (Broadstone Books, 2014). For a period of time, Lizzy lived in Paris where she worked on a project under the title Between the Two Tongues, which she pursued through Columbia University. The project, focused on Mallarmé, deployed an innovative approach to poetic translation, in which she turned untranslatability into a fertile ground for creating “fresh couplings of sound and sense” in multiple expressions. This open-ended creative practice, inspired by a Mallarméan poetics of potentiality and seeking to participate in the writing of collaborative text, voix mixte, built on the notes toward the poet’s unfinished Hérodiade. Parts of this project are collected in Angel Applicant.

In the last years of her life, Lizzy battled an illness on which much medical research remains to be done. She passed away at her family’s home in Sunset Beach, North Carolina. Lizzy is survived by her sister Kate McDaniel, her mother Jean Fowler, and her stepfather Tom Fowler. Many dear friends survive her as well. We honor her and remember her with love.

 – THE PLEIADES

This moon is useless  

I must have another

planets chime in their pockets

I’ve missed them for how many weeks?

gas waits to be flame

the ocean may sit on my lap

with plenty left over

if I discover a new species

it will not be grateful

like a human thing

gasping on the lawn

but I’ve hatched a plot

to outsmart the squid

to read by its bioluminescence

Dostoevsky, Giordano Bruno and Poems of A. O. Barnabooth

Lizzy McDaniel is featured toward the end of our World Encephalitis Day 2019 video,

 You Are the Reason.   Share this video, as each view could save a life.  Our goal is to reach 2,000 views by February 22nd, WED 2019.

72f61a 9d7df361d29c4bfea2c67c7ad32f221c mv2 - A Life Well Lived, A Life Cut Short ~ In Memoriam

 These FaceBook profile frames can be applied to your profile picture on FaceBook. An easy way to raise awareness for Autoimmune Encephalitis and

World Encephalitis Day.

 Donate to Support IAES and our Life Saving Mission

72f61a 3eaae30e022a4006a3b5e928b4bb8d75~mv2 - A Life Well Lived, A Life Cut Short ~ In Memoriam

 Become a Card Carrying Member of International Autoimmune Encephalitis Society

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.

I Have My Wings Back

I Have My Wings Back

February 9, 2019 | Claudia Lozano

I was diagnosed with Transverse Myelitis back in 2013. I am doing a lot better with that and had been doing great up until early 2018.

I was working as a Supervisor in a company that restores and maintains carpet and other flooring, travelling all over Illinois, northern Indiana, and Michigan. I took pride in my work. I was the only woman in the company, and one of the few people in the company who was able to learn how to restore marble, terrazzo, etc. This job was great for me in many ways, because I got to see new places while I worked, and I was never stuck in a routine.

I am an adventurous individual who loved taking spontaneous weekend road trips. I loved to drive, I liked taking the scenic route, and if you were to ask my family, they’d tell you I bought a lot of unnecessary but useful things for my car right before a trip. I have always been a hands-on and a visual learner — I learned a lot of skills by watching someone else do it or trying it out on my own and asking questions later. I liked to fix and customize cars, I was in a couple of car clubs and I would go out to car meets to hang out with other car enthusiasts whenever I had the chance.

I had recently gotten married, I was planning on going back to school in the coming months, and I was making bigger plans with my life. Life was pretty good for me.

Sometime in January 2018 I started having eye pain and migraines on the right side of my head. I originally thought it might just be due to the fact that I was working a lot of overtime and not getting enough sleep. I would take over the counter migraine medication in the daytime and try to rest. I was also having some weird thoughts that month, like thinking that my boss was trying to fire me, and my co-workers were in on it as well. I would try to shake it off, telling myself we’re in a busy system and we’re all just stressed about getting our jobs done.

On February 5, 2018, I was a few minutes away from the shop, where we kept the vehicles and equipment. I was going to drop everything off and go home. As I was pulling in, I started seeing auras that lasted about 10 seconds. It had never happened to me before. I was surprised and scared about these flashing lights. I quickly put everything away, and picked up my wife, who was in school nearby, and we went home. I didn’t think about the flashing lights — just went to bed. The next morning, I saw them again, but this time they were lasting more than 30 seconds. I called off work, and then immediately called my doctor. She had me go in and see her. She told me I might be experiencing migraine auras and referred me to see the optometrist.

The optometrist said my vision and eyes were fine, he also thought they may be migraine auras and reassured me I should be okay to work the next day. I went to work and realized I had to drive about 6 hours round trip for my assigned job. Due to security reasons, it was too late to be reassigned. I toughed it out and did my job. About an hour after going to bed that night, I had my very first seizure.

My wife tells me I had a grand mal seizure. I was foaming at the mouth, my whole body was shaking, and it lasted 4 minutes. I honestly thought I was sleeping, but I woke up about 30 minutes after the seizure and just wanted to go back to sleep. We went to the Emergency Room not too far from us. I was released the same day. Although I told them I had never had a seizure or migraine auras before, I was told that I had no abnormalities and it could have just been caused by the migraine auras. They told me to take the rest of the week off and make sure I got some rest. 

As the week passed, I started to have some focal and absent seizures. I slowly started losing consciousness, and I was admitted to a different hospital. My wife and parents thought it’d be a great idea to take me to the hospital where I was diagnosed with the Transverse Myelitis just in case they were correlated. I don’t remember how I left my house, how I made it into my parents’ car, or what happened after February 10th, 2018, but I do know I regained consciousness and was fully aware of my surroundings by February 14. I was released by February 15th and I was diagnosed with new onset seizures. 

Due to my new condition, my neurologist told me I could not drive or operate any heavy machinery until I was seizure free for 6 months. I was devastated; my freedom as I knew it was taken away from me. Just like that, my neurologist had clipped my wings. I lost my job after they found out I could no longer do the two main requirements of the job. I applied for unemployment and they told me to apply for Social Security. I have been left with no income for almost a year.

As the months passed by, I was still having partial seizures at night. I was taking almost 15 pills daily for seizures and migraines. Some of the medications would make me feel so sleepy, that my routine completely changed. I would wake up, brush my teeth, take my medications, have breakfast, go back to bed and take a 3-4-hour nap, wake up again and finally start my day around 2pm. If I did not take my nap, I felt like I was going to pass out wherever I was.

I also noticed other weird changes as the months passed. I started feeling pain in my scalp, like if when you have the blow dryer too close while doing your hair, your ponytail was too tight, or like if you were out in the sun for too long and didn’t wear a hat. I felt a painful numbing sensation in my right thigh and on my feet, like when your foot falls asleep and you can barely move it. I also started to lose my train of thought, I’d have the same conversation with my family at least two or three times before I realized it myself. I’d stop mid-sentence and completely forget what the conversation was about. I felt like “Ten Second Tom” from “50 First Dates”. I also started to have some aggressive episodes at home. I became more argumentative, emotional, forgetful, and exhausted. Whenever I told my neurologists about my concerns, they would brush it off and change my medication or increase my dosage.

By August, I had had a little over 20 different types of seizures. Some were partial seizures, some were focal seizures, and some were absent seizures. I told my neurologist off, because after 6 months since being discharged from the hospital, I felt that they were not listening to my concerns and were only using me as a guinea pig with 6 different seizure medications. The doctor gave me a bland apology, but one of the residents suggested that I got some blood work done. A few days later, I received a call saying that my VGKC levels were extremely high, and they wanted me to get a PET scan. Even though they gave me the results, I was so sick of not having just one treating neurologist and so sick of not being taken seriously that I went to Rush University for a second opinion.

When I met with my now current neurologist, he sat down and really listened to me about my concerns, my symptoms and how the medications have made me feel. Once he went through my medical records, he immediately sent orders for me to get a PET scan, a pelvic ultrasound, and more lab work. He was also able to take me off some medications that I hadn’t really needed since I was hospitalized. When the lab work and some tests came back, he confirmed I had Autoimmune Limbic Encephalitis.

In November, I was admitted to the hospital for a 5-day IVIG transfusion, EEG monitoring, and to be taken off another medication while I was being monitored. My EEGs came out normal and I was successfully taken off the medication without any seizures during my stay. 

Claudia headed to Detroit for work before her diagnosis.

I am happy to say that I have been seizure free since the switch in neurologists in August last year. Although some of my symptoms, like the sensitive scalp, the mood changes, and forgetfulness still come and go, they are very rare now. I am no longer taking a nap after breakfast since I ceased a lot of the medications, and I feel like I’m becoming myself again.

My neurologist recently gave me the best news of my life, I have my wings back! I have signed up for the classes I was not able to take last year, and I am slowly going to get back to doing the things I used to do. I am going to take it slowly, but I am ready to see what the future holds for me now.

To those just starting their journey with this condition, be patient. Do not take your frustrations out on your close family and friends; they are trying to help you. Do not listen to other peoples’ opinion if they are not helping you with your new struggles. No matter how silly you think your question or concern may be, TALK to your neurologist and make sure you are heard!

Lastly, you are not alone, there are others just like you, and we are here telling our stories and ready to listen to yours.

 You Are the Reason ~ IAES World Encephalitis Day AE Awareness

video 2019.  Share this video as each view could save a life.  Our goal is to reach 2,000 views by February 22nd, WED 2019

Donate to Support IAES and our Life Saving Mission

Sign up now to be a card carrying member of IAES

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.

AE Warrior Gains His Wings ~ World Encephalitis Day Special Edition

AE Warrior Gains His Wings ~ World Encephalitis Day Special Edition


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.

Young Texas Woman with anti-NMDAr Encephalitis fights for her Life and the Life of her unborn child

Young Texas Woman with anti-NMDAr Encephalitis fights for her Life and the Life of her unborn child


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.

anti-NMDAr AE Warrior Shares her Story

anti-NMDAr AE Warrior Shares her 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.

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

Heather Smith’s story 

 

Hi Everyone! Today I thought I would share my story, at least to date. I’m 41. About a year ago I had a gastric bypass and have since lost about 100 pounds. I was the healthiest I had ever been in my life. Happy and really living life for the first time in many, many years. The migraines that had plagued me since my teens were gone. So was the type two diabetes, high cholesterol, etc.

About 3 months after the bypass everything changed. I started getting severe headaches. The kind where you would drop anything in your hands and just grab hold of your head. The kind where you can’t think, can’t eat, can’t do anything but pray the pain would stop. I was seen in the ER on at least 7 occasions. The doctors there just kept saying it was dehydration, the rapid weight loss from my bypass, and/or my migraines. They would not listen to me when I told them this felt nothing like the migraines that I have had all my life.

At the same time, myself and my family began noticing other changes. I was dizzy all the time. Walking in to walls at work, stumbling, and getting tunnel vision. My husband noticed changes in my speech, especially when I was tired. I would stutter, have trouble finding my words, or completely blank out in the middle of a sentence and not remember what I was going to say. Finally, on July 28, 2017, I went in with the worst headache I had ever had. The doctors, tired of seeing me, finally decided to order and MRI. The MRI showed 3 white matter brain lesions; #1 in the right superior parietal lobe, #2 in the left peritoneal region, and #3 in the left temporal parietal lobe. One of the left lesions looks like a MS type lesion, however the other two do not. I was admitted to the hospital and the doctors started looking for a cause.

Over the next 10 days I stayed in the hospital. The headache did not let up. The doctors ordered two different courses of High dose steroids, solumedrol and Depacon. I had no relief from either course. They also did multiple rounds of MRI’s, CT scan, blood work, and a lumbar puncture. The LP was positive for 2 oligoclonal bands. With no idea what was going on, I was discharged on day 10. By this point, I could not walk without assistance. I was prescribed stability crutches. I have rapid weakness, spastic reflexes, fatigue, head pain that is constant around the base of my skull, with multiple episodes of severe stabbing pain all over the crown of skull every day. I am dizzy and have vertigo 24/7. I have increasing difficulties in social situations and public spaces. I have tremors, and spasms that make my whole-body jump. I have insomnia. Bright light, moving lights and colors, and music all increase the head pain. I have stabbing pain behind my eyes that make my vision blur and eyes water. I have nausea and vomiting multiple times a week.

In October the doctors sent an encephalopathy panel to the Mayo Clinic for testing. I am NMDA negative, but positive for N-Type VGCC. This spurred them to do more CT scans to check for cancer. At this point they told me they suspected Autoimmune Encephalitis. The CT showed that I had an ovarian remnant left from a previous surgery as well as two tumors (believed to be endometrioma) on the left side and a small mass in the right abdominal wall. PET scan showed no activity in any of these locations and all masses are believed to be non-cancerous. I have also had a MOG test sent to the Mayo Clinic, but have not received any results from that testing. Currently, we are only treating symptoms. Gabapentin for the tremors and headaches, which does little to nothing. Trazadone to help me sleep, and promethazine for the dizziness. I am undergoing surgery on February 20th to remove the ovarian remnant and all 3 masses. My Endocrine Gynecologist does not believe that the masses are causing any of the Neuro problems. His notes state “Concern by neurology that ovarian remnant or tumor could be secreting a chemical causing her encephalitis. Low suspicion by OB/GYN for the remnant appears to be an endometrioma which are not known to produce these sorts of chemicals or hormones.” However, we are going forward with surgery to rule this aspect of the disease out.

All of my treatment is through the University of Iowa Hospital. I don’t see my Neuro again until a week after surgery. Thanks for sticking with my long story. I just don’t know what to do next or how to proceed. I’ve lost so much to this in the last six months. I’m basically housebound. I cannot drive, I lost my job, and my independence. I’m frustrated and constantly scared. Always waiting for the next bomb to drop.

Heather contacted International Autoimmune Encephalitis Society for help, support, and guidance. She has recently joined the Int’l AE Society Educational Support Group designed for patients with an AE diagnosis and their support people. We will be helping Heather through her journey and guide her in getting the best treatment possible for a best outcome.

72f61a 129d819a6c3e435db2e6354c7e32852b mv2 - Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

First, make a donation to International Autoimmune Encephalitis Society, and provide your mailing address in the transaction. Every donation in the amount of $30 US or more will receive an AE awareness ribbon water bottle with the definition of what autoimmune encephalitis is on the back.a
When you receive your water bottle, e-mail a picture with you using your water bottle with your name and where you are from. All pictures will be posted on World Encephalitis Day, February 22nd.


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.

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

February is our Month to Raise Awareness for Autoimmune Encephalitis

 

 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.

The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

The disease Autoimmune Encephalitis causes many neurological and psychiatric symptoms. To name a few: psychosis, depression, anxiety, balance problems, insomnia, visual hallucinations, aggression, agitation, delusions, memory loss, behavior changes (frequently bizarre), disorientation, confusion, problems talking, seizures, involuntary movements, distorted vision, weakness or numbness of part of the body, many of these symptoms are present for months and intermittently fluctuate.

Since many of these symptoms are also present with bipolar disorder or schizophrenia, and Autoimmune Encephalitis is a newly identified neurological set of disorders, many first-time medical responders such as emergency room personnel, psychiatrists and neurologists have never heard of these disorders or seen a case.  Given that psychiatric symptoms are usually the first and most prominent to present themselves in autoimmune encephalitis prior to more obvious neurological symptoms that are not seen in psychiatric disorders, patients with first time psychosis or other psychiatric symptoms are frequently misdiagnosed as a psychiatric case.  The patient is then detoured away from neurological evaluations and suspicions of central nervous system involvement and incorrectly admitted as a psychiatric patient.

This pitfall, due to lack of medical and public awareness of these disorders, puts the autoimmune encephalitis patient in danger of delayed diagnosis or worse: never being correctly diagnosed.  Autoimmune encephalitis is a highly treatable and reversible disease.  Timely diagnosis brings best outcomes and delays can result in permanent brain damage or a life threatening medical crisis with tragic consequences.

Involuntary commitment or civil commitment

Emergency involuntary institutionalization, (also known informally as sectioning or being sectioned in some jurisdictions, such as the United Kingdom), is a legal process through which an individual who is deemed by a qualified agent initiated by judges, law enforcement officials, physicians, or mental health professionals to have symptoms of severe mental disorder is court-ordered into treatment in a psychiatric facility or ward as an ‘inmate patient’. Involuntary examination can occur when there is evidence that the person:

1.  Possibly has a mental illness

2.  Is a harm to self, harm to others, or self-neglectful

Examinations may last up to 72 hours after a person is deemed medically stable.  Criteria for involuntary civil commitment are established by laws, which vary between nations. Commitment proceedings often follow a period of emergency hospitalization, during which an individual with acute psychiatric symptoms is confined for a relatively short duration (e.g. 72 hours) in a treatment facility for evaluation and stabilization by mental health professionals—who may then determine whether further civil commitment is appropriate or necessary. If civil commitment proceedings follow, then the evaluation is presented in a formal court hearing where testimony and other evidence may also be submitted. The subject of the hearing is typically entitled to legal counsel and may challenge a commitment order through habeas corpus rules.

Without medical treatment that addresses the cause of the patient’s symptoms, immune suppression for autoimmune encephalitis, the ‘inmate patient’ can not be stabilized for 72 hours and legal commitment court hearings commence. This tragic situation is further complicated by the fact that autoimmune encephalitis patients are anti-psychotic intolerant. Since many of the common medications given to treat bipolar disorder or schizophrenic patients are strong dopamine antagonists, the AE patient particularly anti-NMDAr encephalitis patients being neuroleptic intolerant, show: catatonia, rigidity, autonomic instability and altered level of consciousness after being administered these medications.  This outcome is an added ‘nail in the coffin’ to the now more certain possibility that the autoimmune encephalitis patient be sentenced to legal commitment.

It is important to note that once a patient is successfully diagnosed with autoimmune encephalitis, the danger of involuntary commitment to a psychiatric facility has not passed. As my wife’s caregiver, I have learned to be prepared in the event of her suddenly relapsing.  Prednisone historically successfully brings her back to base line with all psychiatric symptoms resolved within a very short period.

The need for an emergency prescription of 60 mg of prednisone became evident to me one memorable weekend.  My wife’s doctor was not in one day and I called and got a resident on the phone. I explained that she was in relapse and out of prednisone. She required an urgent refill to pull her out of her state and resolve her symptoms. The resident asked me to list her apparent presenting symptoms. I said, “Hallucinations, severe depression, balance issues and stupor.” 

The resident responded, “She takes prednisone for those symptoms?”

“Yes”, I reported.   “Prednisone has resolved all of her symptoms during several relapses.”  I realized he knew nothing about Autoimmune Encephalitis and began to feel the helplessness of being faced with a medical professional unfamiliar with her diagnosis so I said, “Look, call her doctor. He can explain to you why prednisolone works for her diagnosis. Right now, we need to get going on a refill!”  He said he would contact her regular doctor and call me right back. Five minutes later he called back to tell me the prescription was called in and ready for pick up. Lesson learned: always be ready for the relapse. The alternative of going to an emergency room and having her misdirected to psych was not an option I wanted to face in the mist of her medical crisis.

As a police officer with an associate degree in Police Science and Bachelors in both Administration of Justice and Sociology, I have had a lot of experience with administering civil commitments, incarceration on the psych ward.  To police officer’s it is known by the terminology ‘to Baker Act a civilian’.  While working in the department my routinely assigned patrol area was in the Ghetto between Milwaukee and Chicago. The Ghetto is the prime location for a police officer to acquire the most experience in any law enforcement department. In my work, it was common place to witness people with mental illness being shunned, talked down to, mistreated by family members or by members of the community who did not understand mental illness.

I still remember the 70-year-old woman who lived in constant fear because she was convinced three men who lived in her home would launch their attack some night soon and successfully slit her throat. I clearly recall a woman who was a survivor or Nazi Germany, asking me and my partner if we thought we could made it past the Germans outside who were gunning people down as they came and went from her home. She had survived war only to be forever psychologically traumatized by mentally reliving the terrors she had witnessed. This was no way for a person to live their life when help was available. Yet, involuntary commitment was the only way I could guarantee the help they needed was delivered in order for them to live their life to the fullest once more.

I did more civil commitments then any law enforcement officer in my 200-manned department. I acquired expert knowledge in civil commitment statutes in order to ensure that citizens received the best opportunity for a safe and improved quality of life by accessing the help and support they needed. Provisions under the statute included victims of drug and alcohol addictions. Some alcoholics or drug addicts are such a danger to themselves and others that they will literally consume lethal substance amounts or have such behavior change they are a danger to society. These citizens are subject to commitment under the statute.

My wife avoided commitment because I knew what to do to reverse the relapse, in her case it was 60 mg prednisone daily for 6 days. Unfortunately, many people with AE do not know that this treatment is documented in research covering treatment protocol for chronic maintenance addressing relapse. Many doctors have never heard of Autoimmune Encephalitis so they are equally unaware. In reading autopsy studies of AE patients, many had died because no one knew to give steroids in a relapse. Suicide, due to autoimmune depression, is also a common threat to the patient in a state of uncontrolled AE.  Insufficient awareness of autoimmune encephalitis continues to be responsible for legal commitments from misdiagnosis resulting in loss of life when an inexpensive treatment such as steroids can completely resolve the psychiatric presentation seen at onset or in relapse.

Placing a Patient on a Psych Hold can Lead to Long Term Legal Commitment

 

The usual course of action is a patient is placed on a 72-hour psych hold by a Judge based on a petition to the court made by a police officer or Doctor. Once this occurs, it is imperative that a family member or caregiver immediately hire an attorney versed in this area of law to represent the patient’s interests. The AE patient is now in the life-threatening situation of not receiving the medical treatment necessary and could find themselves legally committed jeopardizing their life and if they survive, their quality of life.  It is of the utmost importance that the danger this represents is understood by the patient’s family and that no delay for proper legal counsel occurs. If financial circumstances restrict you, going into credit card debit or selling what you can to acquire the legal funds should be considered to save your loved one’s life.

Once the Judge has approved the petition for a 72-hour psych hold, a court date is set for a hearing. An involuntary legal commitment can only be made by a Judge’s court order. Only a Judge can reverse the Judge’s order. The police or Doctor, who originally petitioned the court, can only petition the court to reverse the Judge’s order. The Judge who placed you on the psych hold is the only person who can give permission to arrange for you to be transferred to a medical hospital for a neurological work up. Therefore, if you do have a diagnosis and have been treated by an expert Neuro-immunologist in the past, they are not able to release you from a psych hold or prevent a court date from occurring as they did not place you on that hold and are not working at the facility where you are being held and are not overseeing your care. You are at the mercy of an attorney, their due diligence and research into your circumstances and the Judge in charge of hearing your case.

At this point, for the AE patient, expert testimony from a neurologist in the field of autoimmune neurology could prove to be invaluable.  However, this usually doesn’t happen. The Psychiatric medical community is used to looking at these cases not as a neurological condition but rather a psychiatric illness. Psychiatrists are convinced their diagnosis of bipolar disorder or schizophrenia is accurate and have a career in seeing the patient improve and stabilize with anti-psychotic dopamine antagonist medications. They are confident that their treatment will lead to their patient being stabilized. However, as previously discussed these treatments have a devastating effect on the AE patient. Once legally committed, often for a period of 6-month, that time usually needs to elapse before the case is heard again in court.  It is very hard to get around or get out of a commitment.   You can only be released by order of the Judge.

So, what can one do when psychiatric protocol is followed and a neurological protocol is ignored? The only option is to convince the judge that the patient is suffering from a neurological disorder and requires a full neurological evaluation to determine their diagnosis. In order to achieve this, an expert in the field of autoimmune encephalitis needs to be able to evaluate the patient to provide the medical evidence of the diagnosis. The Neuro-immunologist then needs to explain in court what medical treatments are needed. Warn against what subjecting the patient to psychiatric medications can do in worsening the patient’s condition and the ramifications of allowing the disease to progress unchecked. This needs to be accomplished to the Judge’s satisfaction while the Psychiatrist will be presenting their arguments for how they arrived at their psychiatric diagnosis and treatment plan.

As a patient advocate in the autoimmune encephalitis community, I have witnessed many preventable worse case scenarios.  I have witnessed cases where family felt making the financial sacrifice of hiring an experienced attorney specializing in civil commitment law was unnecessary and felt confident a court appointed attorney would suffice.  I have witnessed cases where a caregiver or family member felt they could speak in court for their loved one instead of a medical professional.  I have witnessed families feeling confident that they could advocate themselves out of the possibility of legal commitment either because they felt they knew their loved one so well or their medical condition or simply loved them so much that they truly felt nothing horrific would befall them.

Unfortunately, each time I have watched a family decide against expert legal counsel from the very first of hearing their family member has been placed on a psychiatric hold, I have had to watch the horrors unfold and a legal commitment occur. I lose sleep to this day over wondering what else I might have done or said to drive home the importance of acquiring immediate expert legal counsel when my mind drifts back to some of these cases. I lie awake sometimes wondering why my words of warning fell on silent ears. Simply stated: a lay person or court appointed attorney going up against a Psychiatrist with knowledge of protocol is a losing proposition. The attorney with good knowledge of civil commitment law working with an AE expert will usually win with the proper medical evidence in hand.

Yet, there is a better way to avoid all this heartache. Prepare in advance with family members for this relapsing remitting disease by having a plan in place when relapse occurs. In my wife’s case, her doctor has ordered 60 mg prednisone tablets orally with a prescribed titration when relapse occurs. Get a good diagnosis by an expert in AE so there is no doubt based on proper medical testing. Proper planning, if the medical condition is known after AE has onset, can avoid civil commitment and a subsequent financial and emotional hardship. Additionally, the AE patient should wear a medical ID bracelet, have their supporting medical documentation in a portable binder at home complete with MRI, EEG on discs if a prior diagnosis has occurred. Included should be all telephone contacts for their treating physician so they can be called by ER personnel.

And so, like the Thorn bird, a species known for its outstanding ability to sing, I write this blog with the hope that my warning song will be heard and a life saved.

Gene Desotell is a retired police officer with an Associate Degree in Police Science and Bachelors in both Administration of Justice and Sociology

ezgif 5 93c9805948f2 - The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

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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