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Loss, Awareness, Help, and Gratitude

Loss, Awareness, Help, and Gratitude

February is AE Awareness month! IAES will be very involved in promoting AE Awareness in many terrific ways throughout month. One of the many things we will be doing is publishing a few more patient blogs than usual. Each will cover something different. Each will highlight, in some way, a different type of AE or AE experience.

As we head into February and in hopes of raising AE awareness, we begin with a blog from a long time AE family member/caregiver and doctor. This blog touches the heart and raises hope! It our sincerest desire that you enjoy this series and will help in our quest to raise awareness so that we collectively move from a family of Warriors and Survivors to a family of Warriors and Thrivers!!!

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February 2, 2021 | By Jennifer Mark, MD

I recently lost a beloved parent to anti-NMDA encephalitis. It is still hard to talk about it as my sister and I went through many challenges to get her diagnosed.  I understand the pain and difficulties that many of you go through with this disease and having physicians or other health care professionals who are unfamiliar with this disease and its treatments.

Over time, I have been willing to speak up about it as I hoped that I can educate others, one person at a time.  I work at a medical center that trains physicians so it is important to me, that I can increase awareness of this terrible disease.  It is my hope that if even one more person gets a proper diagnosis, autoimmune encephalitis can be recognized early and treatment begun thus, giving more patients and their families hope.

I was humbled tonight to find out that others have been listening.  One of my physician partners remembered some of my mother’s history and how it sounded very much like a patient she had been caring for that others had written off to untreatable and in need of palliative care.

Tonight, that family got answers. The lumbar puncture came back positive for AE with a specific match on an antibody.

All those countless hours I spent researching and looking for help resulted in something positive.  I was able to quickly offer information to my physician partner and in turn to this patient’s family.  I was able to offer proper guidance regarding this disease and treatments.  Most importantly, I could give this family hope which is so needed when a diagnosis is initially unclear.

I became a local resource for a rare disease that few have known.  IAES, I offer you my gratitude.  The information and resources I found though this organization, website and members have allowed me to be a resource to others.  I wish to say thanks for the outstanding education that you have offered me and my family. 

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Graphic courtesy of a pediatric AE member/patient

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

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

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Loss, Awareness, Help, and Gratitude 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Against All Odds | Contre vents et marées

Against All Odds | Contre vents et marées

Exciting news: February is just around the corner, marking the start of Autoimmune Encephalitis Awareness Month 2021! Join us for our virtual speaker series with talks from top AE researchers by signing up here.

Today’s blog highlights an AE Warrior, her fight, her success and the incredible need for AE awareness. 

January 27, 2021 | By Catherine Cloutier

My name is Catherine Cloutier, and I’m currently 28 years old. My journey with anti-NMDAr autoimmune encephalitis started in April 2015, at the age of 23.

I had previously completed a human nutrition degree at Université de Montréal and I am still practicing as a Registered Dietitian in Québec Canada, and I am a member of my professional order (Ordre professionnel des diététistes du Québec).

As I was studying for my finals of first year in my Bachelor of Law at Université de Montréal, I started getting severe migraines. Of course, as a well-driven student and hard worker, I blamed it on fatigue and stress. 

On May 7, 2015, I was leaving for a three-week trip with my then-boyfriend to Burma, Vietnam and Qatar. I was so excited to finally get some vacation time after a hard year of managing work and studies at the same time! After arriving, I was really tired, couldn’t handle the heat and needed multiple naps in order to be able to do simple tourist activity. I blamed it on accumulated fatigue and jet lag. Throughout the trip, I acted erratically, including crossing streets without looking, and a motorcycle accident, to name a few.

Our departure was tumultuous, and I couldn’t sleep for most of the journey home. As we landed back in Montréal, I thought I was going to be able to sleep properly. However, during that night, I kept having hallucinations and was very agitated. 

My boyfriend brought me to Hôtel-Dieu hospital, where I had a moment of lucidity and nothing on the exam came back to warrant admitting me.  

The day after, it got even worse. I couldn’t take a shower by myself and was slurring a lot. They took me back to the hospital, where I was put in a hallway bed. Anxiety was through the roof and they did multiple blood tests and an MRI. 

All results came back negative — except that five years later looking at the results of my blood tests, a microbiologist pointed out that something could be up regarding my immune system. It was not noticed by the doctor in charge at that moment.

I was later transferred to Notre-Dame Hospital in Montréal. After hallucinations, demonstrating an impossibility to differ between dream and reality, one neuropsychiatrist claimed that I was faking it all along and discharged me. I had a seizure on the way out of the hospital and other healthcare professionals realized at that point that something big was going on.

I was sent in for another MRI and had a PET scan, all came back negative. During the next week, they said that it was neither viral nor bacterial. 

The resident doctor then conducted a lumbar puncture and the results came in five days later: anti-NMDAr autoimmune encephalitis.

They immediately started IVIG treatment for five days, and after one treatment, I was already starting to feel like myself. I was discharged four days after the end of treatment. 

Since then, I still have short-term memory loss and levels of anxiety higher than my usual self before. However, it made me strive even more for my goals: I was back in law school less than two months after being discharged and completed my law degree in two years; then pursuing my master’s in common law the following year. After failing the Quebec bar twice, I finally passed the Ontario Bar, where I am currently articling. I will be sworn in as barrister/solicitor (lawyer) in less than two months. 

I hope that my story can inspire some that are going through it. It was the toughest period of my life. The hardest part is having people who surround me who still don’t understand it, and likely never will.

With love, Catherine

Picture2 500x333 - Against All Odds | Contre vents et marées

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

guidestar platinum logo 300x300 1 e1605914935941 - Against All Odds | Contre vents et marées

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

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Against All Odds | Contre vents et marées

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Against All Odds | Contre vents et marées 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga (Part 2)

Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga (Part 2)

October 30, 2020 | By Dr. Robert Larry Reese-Johnson  

Read Part 1 here.

 Robert Larry Reese Johnson Reginald 1 500x333 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2)Jan. 1, 2020 – It was a new year, and based on the progress that he’d made I emailed Dr. Tomatore regarding this progress and questioning, through my research, exactly what tests results were reviewed, what tests were done and how exactly the diagnosis of CJD was made? Dr. Tomatore never responded to this email, nor did he an acknowledge receiving it.

For the next two weeks, the medical team was re-evaluating Reggie’s care and treatment plan based on the progress he was making and with different symptoms. During this time new MRIs, blood tests, and EEG were ordered to determine what exactly was going on. 

I then got a call from the resident in charge of Reginald’s care for that time. Upon review of: the EEG, which showed NO EVIDENCE of the preliminary things they saw earlier; and the MRI, which showed evidence of clearing up the previous spots; and the blood tests, that were still to be determined, they were moving off the CJD diagnosis and agreeing with me that this this was AE. They were also moving forward finally with the next line of treatment, rituximab, and he was set to receive that treatment.

Rituximab had been denied by insurance from the first of December based on the CJD diagnosis, but now it was approved based on the correct diagnosis. There was also a family meeting around this time, at which they recommended sub-acute rehab for Reggie, asking me for facilities that I may suggest in the area for him to go, and the team moved forward with sending referrals. 

On Jan. 20, the blood test results came back and the CASPR2 antibody was identified as the cause of his AE. Reggie then went through a full-body CT scan as the creation of the antibody is known to fight off cancer. The results of the CT scan showed no traces of tumors or cancer anywhere, and the team would still try to move him to a sub-acute rehab. Two days later, the nurse case manager called to tell me that he had been accepted to a facility in Lanham, MD. There was concern on my part because I did some research and I was uncomfortable with reports on quality of care by that facility. Then there was a snafu with both time of discharge and dispense of medicine, which he never received. 

Upon arriving at the subpar sub-acute center, as Reggie was settling in I was talking to the nurse—there was only one of her for 13-plus patients—he fell twice against a cabinet with metal handles. Prior to his being admitted here, I had let them know he had to be restrained in both his bed and chair with a waist belt, as he attempts to get up and falls. They denied I said that, letting me know they would have never accepted him under those conditions.

Ultimately, I read the reports provided and they only stated that Reggie was agitated at times and would get up, which was a blatant untruth. As a result of two falls over 24 hours, they called 911 and he was transferred back to the PG ER.

Upon arrival at PG, Reggie was evaluated by the attending physician, who was familiar with him from his original admission. I informed this doctor of the AE diagnosis and what caused him to be brought back to the hospital. He let me know he would evaluate him and try to work with me regarding my requests moving forward. Reggie then checked out fine from the falls and that they had no medical reason to admit him. 

Knowing the situation however, the physician would try to complete a doctor-to-doctor transfer for him from PG to the attending doctor at Georgetown. While the doctor was doing this, two social workers told me Reggie had three options:

  1. He could be discharged to me and go home.
  2. I could transport him to Georgetown ER.
  3. He could be taken back to the sub-acute facility, as I hadn’t given them a chance.

I was opposed to all options and I was not signing for his discharge, so I got a CareFirst case manager to talk with the social workers. They came back to me with the case manager on the line and it was determined that Reggie would return to the sub-acute facility, be evaluated by their medical staff and nurses, so they could determine he’d be readmitted to PG’s rehab. I agreed and he was medically transported back to the facility that evening.

Upon Reggie’s arrival for the evaluation, I was taken into the conference room to meet with their team. They told me they could not do an evaluation, as promised, and could not recommend acute rehabs for a patient. Also, they informed me that they could not keep Reggie, as they could not ensure his safety, as by law they cannot do any form of restraint. They advised for me to take him back to Georgetown ER on my own and that I not him leave there.

I replied that I was unable to take a medically fragile, immunocompromised patient, on a cold night in my car. They then agreed to have Reggie transported back to Georgetown in a van, but without medical personnel, to the ER at Georgetown. I got on the phone again and informed the case worker all of this, and the violation of the agreement worked out. The van then arrived and did not have a wheelchair in which he could be transported. The staff said that if he used their wheelchair, I needed to bring it back the next day. I agreed and he was prepared for transport. Just as he was wheeled out, they told me that the van had left and they could not contact the driver to come back. 

I informed the staff that as a last resort I would take Reggie to Medstar Georgetown in my car as HE COULD NOT STAY HERE ONE MORE MOMENT because this facility WOULD NOT BE A PLACE I WOULD WANT ANY LOVED ONE! Also, I informed them that if Reggie, because of his compromised immune system, got as much as a sniffle and this caused his recovery to be extended, I would be suing the facility. He was placed in my car and I began the took him to  Georgetown. All this time, Reggie wasn’t provided with the crucial medication that was prescribed for his condition.

As I was transporting him to Georgetown ER, I called ahead to inform them of the situation. I also called the supervisor of case managers and the case worker so that everyone was fully aware. During three conversations with the supervisor, I was told the sub-acute rehab hadn’t known about Reggie’s needing restraints on his waist and an alarm on the bed, prior to or when making the referral. 

He was admitted to the ER, where he stayed in a room for two days, despite needing an individual room because of his agitation and need of a sitter. I was also informed at this time that referrals would be made to Encompass Health in Virginia or Capital Region Physical Therapy at PG for acute rehabs. The director for Encompass called and let me know they would turn him down, but would re-evaluate if Reggie required only an alarm on the bed as an alert. 

Jan. 24-Feb. 5 – Reggie received a room assignment in the post-surgical unit. I was impressed with the care as he was receiving PT and OT every day, and he was walking and progressing with less agitation. They were actually working with Reggie to devise a plan for him not to be restrained by the waist belt, and he was right outside the nurses’ station and they available to assist him immediately.

The social worker and the rehab physician for the unit, though, had no clue that Reggie was a returning patient to the hospital until I told them. The rehab doctor actually offended me by saying, “I would suggest or recommend a sub-acute rehab because that would get the most bang for your buck from insurance.” This was based on getting things out of insurance and not on the patient’s quality of life. The last time rehab was suggested and tried, Reggie went to acute rehab then to sub-acute rehab, both of which were cleared by insurance, and this would have been a total of 10-12 weeks or less, if they would have done it correctly?

Feb. 5 – Reggie moved back to the neurology unit and the care varied as they attempted to get him to be less agitated so he’d be accepted by acute care rehabs. There was no family meeting regarding this plan or any plans moving forward once Reggie was readmitted to Georgetown. When he was there previously, he received PT, OT and speech daily, and the nursing staff was walking him and getting him up to the bathroom daily, as he showed the interest. This no longer happened in the neurology unit. Most everything that Reggie did and attempted to do was prompted by me when I visited, or when I showed the nurses who agreed to do it and tried when I was not able to be there.

Feb. 15-22 – While visiting him in the evenings over two weekends I assisted him in eating of his meals. I then noticed he was not chewing as well as he had been previously. I inquired of the nurse and tech if this is what they had experienced during the previous meals, and they confirmed it.

I later noted that Reggie’s bottom row of dentures were not in his mouth because someone had removed them and placed them in a green cup. I alerted the nurse of this on Feb. 16, as my concern was that this could have caused choking or other problems with his lungs. Her response was that she did not know he had a bottom row of dentures, but said she’d write it in his record chart. Imagine my surprise when I came in the next weekend and discovered the same thing was happening and his bottom dentures were removed again; when I was assured that all would be informed? So, I took the action of writing on the chart, in his room to ensure dentures are in before eating, and that he has both top and bottom.

Feb. 27 – I was contacted at 2 pm by the attending physician that Reggie had experienced a fall while trying to get out of his chair. Because the footrest was in the up position, he got stuck and fell. Though the chair’s alarm sounded, the nursing and tech staff didn’t arrive in the room, and he fell on his knee and head. It was our experience that the nursing and tech staff were inconsistent in arriving in the room after Reggie or I hit the call button. All staff were aware that if Reggie tried to move or grabbed himself, he was letting them know he needed to use the bathroom and attempts should be made to get him up. The connections within his brain are being encouraged to promote independence. Right now, though, he needed assistance because I didn’t want the habit to form of just urinating or having a bowel movement on himself while trying to go as he normally would.

Mar. 2 – A meeting with the medical director and others of Georgetown was held regarding “next steps” and where they were planning to send him. The doctors gave me a great deal of information and I respectfully allowed them to speak. But they contradicted previous statements from other doctors. I stopped them from talking and said, “Reggie will not be going anywhere except Medstar National Rehabilitation Neurorehabilitation Acute Rehab or Encompass Health and Rehabilitation in Virginia!” If they proposed anything else, they would hear from a team of lawyers that I had contacted with all the prior information. Within the next hour they had a new PT physician evaluate Reggie and he was then set to move to Medstar NRH on Mar. 5.

Mar. 5-Apr. 1 – Reggie was admitted to Medstar NRH and made great progress there receiving an hour everyday of speech, OT and PT. I was there daily until I wasn’t allowed to because of COVID-19. Reggie finished his 30 days in acute rehab and was transitioned to sub-acute rehab at Largo Nursing and Rehabilitation Center. 

Apr. 1-28 – Reggie was admitted and continued sub-acute rehabilitation at Largo Rehabilitation and Nursing Center and even though this facility was just a 10-minute drive from our house I could not visit him, because of the Covid-19. I was able to talk on the phone or Skype with him daily. This absolutely killed me, as I knew what we had gone through in the past and I wanted to be with him to ensure the maximum was being done. As we were battling AE, limited knowledge of healthcare workers and therapists have of both it and COVID-19 caused concern.

Apr. 28-Jun. 28 – Reggie was discharged from the sub-acute rehab for home-based rehab through the Medstar VNA. He received 10 sessions of PT and OT and 14 sessions of Speech throughout this time, and he improved every day. 

Jul. 27 – Reggie was taken to Georgetown because he had a two-minute seizure at home. It was determined this “breakthrough” episode was caused by Reggie’s not following his medication protocol, i.e. not taking anti-seizure medications as prescribed. Even before his bout with AE, Reggie was non-compliant with medications and argumentative about taking anything, even vitamins. While in the hospital, he completed his second round of rituximab infusion.

Aug. 13- Oct. – Reggie is now an outpatient who receives OT and speech therapy at least twice weekly. He is making great strides and progress and I know will continue to recover with these therapies. I am impressed by these therapists, as they are trained in the field and have a neurological background. The OT and the speech therapists work together to help Reggie with his aphasia and apraxia toward reaching his stated goals. At the time of this writing, I am hopeful and joyful of what is going to be a better than before recovery!

Conclusion – This is the entire saga to this point with Reginald Johnson. As you can see, we have been through much that is both heart-wrenching and frustrating. At times, we not only have had to fight this disease, we have to fight the medical community so that they would not stop searching, treating, and taking proper care of him.

Reggie appears to get better every day. I have faith that full recovery is possible and will happen. I wrote this so all who choose to read it can be helped and assisted in any way. More importantly, understand to fight for your loved ones—especially when they cannot fight for themselves! 

Pride 2019 1 431x500 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2)

 

 

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

seal - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2)

 

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

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2)

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2) 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga (Part 1)

Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga (Part 1)

October 28, 2020 | By Dr. Robert Larry Reese-Johnson

Robert Larry Reese Johnson Reginald 3 227x500 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1)Oct. 3 – This was the date in 2019 that this all began for my husband, Reginald Johnson-Reese, and me. I arrived home from work around 5 pm, and saw Reggie on the couch. We had a normal conversation as every evening. I then went upstairs to change and went to place my clothes in the washing machine.

The laundry room was in total disarray, as if someone had fallen within the room. I asked Reggie what happened and he couldn’t remember. He said he had passed out and fallen, but couldn’t recall when, nor for how long. He didn’t want to go to the hospital, had no injuries and seemed to be holding normal conversations. Knowing what I know now, this was what I believe to be his original seizure that sparked the entire saga that I am documenting here.

Oct. 5 – Reggie complained this entire day that someone was talking in the background of his phone conversations through the earpiece he was using. He went so far as to call his mobile carrier, asking whether it could possibly be an app running in the background or an issue with the phone. I now know this was another symptom of autoimmune encephalitis (AE).

Oct. 6 – Reggie and I were on our way to church. He was unusually quiet and not making comments about my driving. When I asked Reggie where we were going, he answered me in “gibberish.” I then asked him who I was, and he answered again in the same “gibberish.”

Immediately, I took him to the nearest hospital, where we walked in together to the Emergency Room (ER). He was admitted to the University of Maryland Capital Region Healthcare at Prince George’s Hospital Center (PG), for symptoms of what they diagnosed as a stroke, though he never had all the symptoms of stroke, nothing other than confusion and not speaking correctly. He was treated with tissue plasminogen activator (TPA) medications, to which he had an allergic reaction and then small seizures.

Oct. 7-16 – Reggie continued to receive inpatient treatment for what was believed to be a stroke. During this stay he needed a feeding tube to provide nutrition and calories for him. The initial tube did not remain in place and twice it had to be repositioned and reset. 

Oct. 16-Nov. 1 – Reggie was admitted to and received acute rehabilitation treatment from the physical therapy unit at PG, progressing from what they still believed to be a stroke. Later data provided to me on three different occasions while at Georgetown Hospital, indicated Reggie had no current nor previous evidence of a stroke, based on MRIs from that facility’s images. As a result, Reggie was misdiagnosed and treated for a medical condition that he did not have any evidence of having.

Nov. 1 – I received an afternoon call and request for a joint conference with the treatment team and social workers from PG. Reggie and I were advised that he had received clearance to be admitted to a sub-acute rehab center, Capital Region Future Care. While on the call, Reginald determined that he did not want to go there, against the team’s medical advice. He was allowed to make this decision, despite the fact that he was cognitively unable to process what was being said to him, per the facility’s speech and language pathologist, who had diagnosed him with Wernicke’s Aphasia which impacts his memory and cognitive processing abilities.

I had informed the attending doctor on Oct. 29 that the doctors, nurses and therapy staff would need to prepare Reggie for the next level of care, i.e. that he would not be coming home because he had another step in the process. They obviously did not have these conversations.

At 7 pm, under the direction of the social worker and supervisor, the hospital made the recommendation of discharging Reggie for home care, regardless of his readiness. They knew the Visiting Nurses Association (VNA) could not come to evaluate him at this late hour, and they informed me of that. I told them that I could not take off from my job to provide him with care on a full-time basis without VNA coming to the home daily.

Regardless, PG allowed Reggie, without the ability to read or understand what he was reading, to discharge himself. He was experiencing agitation and bits of rage at the time directed at me as I would attempt to assist him. The supervisor of social work said to me, “Mr. Johnson has to go because he cannot stay as the insurance company is not paying for a bed here past midnight…”

Nov. 2-4 – Reggie was at home with me, during which he was unable to read his medications, had two separate anger episodes in which he attacked and argued with me. I called the VNA to come for an initial evaluation on three different occasions on Saturday and Sunday, left messages and got no response to my phone calls. When Reggie threatened me on Monday morning, I called the attending doctor on his discharge papers and the VNA and was advised to contact 911.

The ambulance and police arrived and the EMT confirmed that Reggie could not determine the correct date and year, remember what the situation was, nor that he had previously attacked me. Reggie was given the option to allow me to drive him back to PG’s ER, which we did. He remained there, in a bed in the hallway for about 15 hours, before being transferred to his own room. He was disoriented, agitated, combative with me, and cognitively unable to process.

Nov. 4-8 – Reggie was readmitted to PG for review of medications and the symptoms he was experiencing. During this time no further MRIs were ordered, nor were any other tests done to determine whether he was experiencing the typical symptoms of a stroke, which could have determined something more significant was going on with him.

Nov. 8-10 – He was discharged that afternoon again to receive home care from the VNA. I called them twice that day, three times the next day, and twice again the following day. Again, no one responded to my call to come to do an evaluation or schedule an evaluation of him until the third day, while we were on our way to church. I let the caller know we would be back by 1 pm and they could come then. I was informed that this would not happen and that they were unsure if they could come on Monday.

While at church, Reggie experienced a seizure towards and was transported by ambulance to Medstar University of Georgetown Hospital (Georgetown) for assistance. There, he was treated with anti-seizure medications and had images taken through MRI and CT scans.

Nov. 11-13 – Because the doctors were concerned when Reggie’s level of

speech didn’t return to his baseline, he received care in the Neurology ICU unit, because the doctors were concerned that at this time Reginald did not return to the level of speech that was his baseline prior to the seizure. That was an indicator that he was suffering from something else other than a stroke. 

Nov. 15 – I was informed by Dr. Mayson, a neurologist and stroke specialist, that Reggie never had a stroke, because the MRIs from PG and the ones obtained from Georgetown showed no evidence of dead areas of the brain—the major sign of a stroke. This should have been discovered by the neurologists at PG and upon that information, if they did not know what Reggie was experiencing he should have been medically transported to a facility in the area prepared to treat other possibilities.

Georgetown immediately began to treat Reggie for AE, a diagnosis that from the onset of symptoms requires an aggressive treatment course, and we know now that is actually the disease that Reginald had for six weeks. His misdiagnosis and receiving treatment for the wrong ailment may have caused further relapses and a continuation of the disease to the progression that it has now. This has also had an impact on his time of recovery and long-term effects as his life proceeds.

As a result, I filed an online complaint with the Maryland Joint Commission on Health and the attorney general’s office for investigation of the above.

Nov, 14-15 – After review of both the PG and current MRIs, it was determined that there was no evidence of stroke activity within Reggie’s brain. This is when the neurologist believed that Reginald may be suffering from AE, and began treatments with five days of steroids and IVIG. They also performed a procedure in which a tube was inserted through which five infusions of plasmapheresis  could be administered. The attending neurologist conducted a lumbar puncture to obtain cerebral spinal fluid for testing, as all other tests were coming back negative for all other diseases or cancers.

Nov. 20- Dec. 1 – Reggie was to receive five plasmapheresis infusions over the course of 10 days. I was informed by the technician that was doing the treatments Nov. 20-21, but that he could not have three treatment days in a row. Therefore, he would have one on Nov. 23, then again on Nov. 25 and 27.

When I arrived at the facility on Nov. 25, I was told that he was completed his treatments. Naturally, I questioned what I was told and said he would need at least one more treatment, maybe two. The nurse responded, showing me on the computer that they had recorded the treatments. I questioned the dates because I had not seen them there that day. I was ignored and they attempted to reassure me that he was done with those treatments.

On Nov. 23, Reggie had surgery to insert a GI tube for feeding as he was not eating on his own. He was up from recovery by noon. I was with him from early that morning until the evening. When I was leaving, I told the nurses’ station that he was bleeding into the bag attached to his stomach tube and the tube attached to his nose; I was informed that this was normal clearing or the stomach contents. I questioned this as it was now just seven hours’ post op and this was not the case for the entirety of the day.

At 5 am the following morning, I got a call from the head of the surgery team that my permission was needed for emergency surgery to replace the tube and reset it as Reginald had internal bleeding overnight (which I was not informed about by the floor nurses that night) as the tube had come loose from the abdominal wall. I let them know I’d told the nurses as to my concern prior to leaving and was ignored or told not to worry.

After the second surgery was completed, the surgeon came to the room and explained the person performing the first surgery placed only two staples to secure the tube, thinking it would stay with that way, despite given Reggie’s level of agitation and movement during the surgery. Four staples were placed in during the second surgery as that is what that surgeon customarily does.

In advance, I had let the medical team know he is severely agitated with tubal restriction, and that this tube remaining in place was a problem at the first hospital, but I was ignored. The lead team surgeon stated to me that I should not worry and that what happened with Reggie would be a topic of their next team meeting. I was furious!

His final night, he was moved overnight to the ICU because his oxygen level dropped to a dangerous level. Once more, they neglected to tell me that this had happened. 

Dec. 3-5 – Reggie was moved twice more because he was no longer in need of IVIG treatment. At this time, the plan was discussed with me by his attending team was to obtain another lumbar puncture, conduct more MRIs, and proceed to Rituximab treatments, as Reggie was now 12-15 days from his last plasmapheresis treatment, and there had been little or no change.

Dec. 11 – I was called for a meeting with Dr. Tomatore, the medical team and a palliative care doctor. During this meeting, they told me Reggie’s diagnosis was Creutzfeldt-Jakob disease (CJD), fatal without cure and no treatment. It was explained that he would not get better, but would progressively get worse and most likely quickly decline to the point of dying. They added his overall life expectancy was a year or less, and that more than likely he would contract an infection, and this would take his life. We were advised to change his resuscitation orders from resuscitate to do not resuscitate as there was no hope of Reginald surviving this disease, so we complied.

This devastated my family and me, and I also told that because Reggie would need a nursing home and/or hospice care that I would need to work with the social workers to attain Medicare and/or Medicaid for the long-term care for Reggie. This was heart-wrenching because the date was right after our anniversary, Reggie’s birthday, Thanksgiving and within weeks of Christmas. 

Dec. 12-13 – After researching CJD, I sent an email to Dr. Tomatore in which I requested a second opinion, including the exact version of CJD that Reginald they’d diagnosed. My question was regarding the signs I was seeing that weren’t  

consistent with what I was reading from CJD. I also asked for an explanation of all the tests and images used to determine that this was CJD, as I understood that the most conclusive and newest tests used to determine CJD came back negative, but they were ruling that out because it had a 10 percent false-positive rate. Dr. Tomatore responded that they were excellent questions and requested my phone number to call me, which was within the email. I never received a call.

Dec. 16 – Reggie’s sisters and I met with Dr. Mayson and the team to review the the MRIs taken prior to the treatments, the tests and additional information related to care he received before being transported to Georgetown. Dr. Mayson explained that the MRIs conducted prior to treatments or the anti-seizure medications demonstrated the areas of the brain that were impacted were the outside portions of primarily the frontal temporal lobe.

He also said the CSF tests came back with three of the four tests positive for the protein for CJD, and these tests were 85 percent accurate. The team again stated that there was nothing more they could do except keeping Reggie comfortable, and that I should look into long-term or hospice care because CJD takes an aggressive downhill path to death. 

Dec. 11-27 – Reggie was still under the care of the neurology team and the palliative care doctor, and they were treating only his symptoms. They didn’t conduct tests for images, fluid or blood after the November treatments were completed. It felt the team was no longer concerned for him, and needed him out of the hospital to make space for someone that was not going to die.

A few days before Christmas, the medical and social work teams came into Reggie’s room to tell us he was denied both Medicare and Medicaid. What happened was they submitted incorrect income to receive the benefit: my income wasn’t as much as they indicated, nor was he receiving a pension. With the information at hand, they recommended discharging him for either hospice or home health care, to be paid for by me or us.

I was insulted and livid because the figures that I provided them with were misinterpreted by both them and the disability office. I reiterated the correct information for them to resubmit for review: Reggie doesn’t have a pension; we do not have assets; nor do I make a salary that is able to pay our monthly bills as well as pay for a hospice or long-term care. As a result, I refused signing on for discharged anywhere without a review of the corrected information.

Shortly after Christmas, Reggie began speaking his name, interacting with the medical team and nurses, and the palliative care doctor. He was showing signs of progress not in alignment with the CJD diagnosis! On Dec. 28, Dr. Mayson examined him, stating he was more interactive than he had ever seen him and added, “Well, Mr. Reese, medicine is not an exact science.”

Right before the new year, Reggie wasn’t in his room when I arrived around noon. I inquired at the nurses’ station as to where he was, hopeful he’d been taken for more tests based on the improvement. They scrambled to his room as they had just left it, and he was in the bed. They opened the bathroom door and we saw Reggie on the floor. He had gotten up from the bed on his own and fell, as he had either walked or crawled to the bathroom. He told me they said I was coming and he wanted to take a shower. After changing and cleaning Reggie, they had unfortunately failed to set the alarm on the bed, nor did they set the wait-belt restraint that he had to ensure he not get up by himself.

Read Part 2 here.

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

seal - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1)

 

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

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1)

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1) 

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

 

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Prithima’s Story

Prithima’s Story

September 30, 2020 | By Prithima Sunasee

A NOTE FROM PRITHIMA’S HUSBAND, REELY 

I connected with Tabitha at International Autoimmune Encephalitis Society through Facebook  thanks to my wife’s cousin soon after my wife was evacuated to the UK. As I was trying to understand the illness better and make sense of things, Tabitha was a vital sounding board for many of my concerns surrounding the research and treatments out there and what to expect. She was always a text and phone call away when I needed her, especially when I was trying to understand the side-effects of different medications. She guided me through every assessment and report I received regarding my wife. Knowing who to turn to for support during a crisis can help you feel less overwhelmed and more able to manage your feelings and reactions, with the knowledge and support from Tabitha, brought hope and peace of mind.

—-

So my journey starts when I returned to Dubai after celebrating my daughter’s 1st Birthday in the UK with my parents and my family in Hastings in July 2016.
Everything went beautifully and we had a great time.

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My dad was battling Myeloma, a form of cancer. He had being fighting this for a while but had managed to come to my wedding in Dubai, and come to the birth of my daughter in Dubai, and celebrate her 1st birthday in the UK. He was a very strong man and during his illness he also suffered from STEVEN JOHNSON syndrome, which was when certain medications don’t react well together and cause a burning effect on your whole body, and his whole body was covered in blisters, it was extremely painful but he was always so strong and never ever gave up. He was our hero, especially mine, I would tell my dad everything and anything and he would always advise and guide me.

Once back in Dubai, I continued with my work for a trip support company as an Account Manager. I had worked in Aviation for over 15 years and it was an industry I was always passionate about.

But in November 2016 I started feeling unwell and was getting a headache, and I knew instantly this was not a normal headache. I knew something wasn’t right, but for a few days I ignored it as maybe “taking on too much stress from work”.

My dad was a retired nursing assistant and we would always run to him for advice whenever we were not feeling well, and he would tell us what to do. As soon as I told him about this awful headache I was having, he told me to see the doctor. After visiting the doctors, they said to take some pain killers and come back if the headache did not go away.

Once again I waited a few days and the headache just got worse, this time my dad said to ask the doctor for a scan and which we did, the scan was scheduled for a weeks’ time.

But before I got to that week, one night I knew I was not well at all. But I fed my daughter before putting her to bed and made sure the house was nice and tidy (I was a bit of a clean freak as some would say). Then I went to bed…

And woke up in ICU having been in a COMA, I was told that when I went to bed at night, I woke up hysterical and was crying and didn’t want to go to hospital. My husband rang our friends who lived nearby, and they came and picked us up to take me to hospital. On the way I had a seizure and that was it, my condition deteriorated, I had multiple organ failure and was put on life support.

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The medical staff in Dubai were great and so were the doctors (I’m told) but no one knew what was going on with me as it was something they had never seen. Whilst in the ICU, I was being fed with a tube in my stomach and breathing through a machine. My husband spoke to my Neurologists, and in time managed to get hold of Dr Lunn from University College London Hospital. My husband and the doctors described my symptoms, and together Dr Lunn confirmed that I had Anti-NMDAR Encephalitis.

Dr Lunn then collaborated with the doctors in Dubai on treatments. But things got worse and my condition deteriorated again. They discovered I had a teratoma in my ovaries and that was the cause of the Encephalitis. There was no option, my ovaries had to be removed in order to save my life, and my husband had to make that final decision for the doctors. I was in a coma during this stage so still oblivious to what’s happening outside my very dark world.

Whilst I was hospitalised, my parents and all my family were constantly being updated on my condition as they were all worried. My dad and mum were especially worried as they were so far away.

My mum decided she would come, and my dad would come a couple of days later with his sisters (as he could not travel alone because he was quite poorly himself).

They, amongst other members of my family, came to see and support us and my parents.

My husband and Dr Lunn decided that the only place I could be treated was either the US or the UK, and as the UK was my home country, the decision was for me to get treated in the UK.

So my dad, mum and family had to go back to the UK. My dad had to get all the paperwork to arrange for my arrival and provide proof that I have lived and worked in the UK (in order for me to get treated here).

My husband really was a great strength and support, and has full faith in god and let god guide him in everything he did. He was currently working for a Medevac company based in Dubai. And for us his company were the best, they helped getting my repatriation arranged and made possible everything that seemed impossible.

 prithima 3 375x500 - Prithima's Story

Whilst I was being prepared for my repatriation, my husband had to sell up everything that we had in Dubai (our apartment, our cars, and all our household items). He managed to get a transfer with his work and get a job in the UK, although the job in the UK was 2 hours from Hastings and 1 hour from UCLH, the hospital I was being transferred to.

I finally arrived in the UK and was admitted at the University College Hospital, London. I was cared for by Dr Lunn and their great Neurology and Neurosurgery department.

Whilst at UCLH, Dr Lunn had a great team looking after me during my very long stay. For 10 months I was in a coma and had no clue what was happening on the outside world, I didn’t know who was coming to see me, what they were saying and what they were doing. I was just in a very dark place.

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Finally in late June/July (after my birthday I left the ICU) and was moved to the special ward, but my memory and recollection were still very bad. I have pictures and a diary of family and friends coming to visit me, and taking me out, and talking to me – but to date I have no memory of that, even though they say I was responsive, but as much as I rack my brain to remember, it is just a big blank space in my brain. It’s a big part of a puzzle that I can never seem to fit anywhere, and remains blank and missing.

Even though my dad was poorly himself, he still made the journey from Hastings to London to see me and talk to the doctors to understand what was going on. He got my mum into the pattern of coming to visit me whilst the doctors were doing their rounds, and would call her when she went by herself.prithima 5 500x376 - Prithima's Story

This is one of the last pictures I have of me and my dad together. Unfortunately, my dad’s health deteriorated whilst I was in hospital and he passed away August 2017, peacefully with my mum and family by his side.

The doctors told my husband and family not to tell me about my dad in case it affected my recovery, as I was still very fragile. I was unaware my dad had passed away, and would ask my mum why my dad had not come to visit me. I would ring her at home and ask where dad was, but I was always told he was tired and sleeping. Mum kept saying “dad loves you lots and is missing you and wants you to get better soon”.

So I worked with the nurses, the staff, the physios and my Occupational Therapist Jane Richmond, who made me build my strength and helped me walk, talk, and write again. I had to learn to stand and be independent and be strong, because I was so weak from being bed bound for so long. Once I started getting my memory back I felt that I need to be strong for my daughter and I need to be strong to show my dad what a brave girl I am. I knew he would be super proud and was doing everything so I could show him my achievements.

Soon with the help of the amazing doctors, Occupational Therapist, nurses and amazing team, I started improving and was allowed to go outside with the nurses and my family.

prithima 6 500x375 - Prithima's Story

I kept getting stronger and thinking about how I wanted to be back to normal and strong again for myself and everyone. Soon I was able to eat by myself.

Slowly I got better, and my medications were reduced but there was still a lot from what I can remember, maybe around 30 tablets a day. One of the many medications I was on was steroids. This made me put on a lot of weight, which I’m still struggling to lose; this weight gain affects your confidence big time in every way possible.

prithima 7 376x500 - Prithima's Story

My husband and my mum asked the doctors if I could come home to spend Christmas there, and they agreed. Before this they decided that they needed to tell me that my dad had passed away.

So my mum, my husband and other close members of my family came and took me aside, and slowly explained that dad had passed away. And I think I shed a tear but nothing really sunk in, and I didn’t really understand what they were saying. So I just agreed and said that I understood and carried on with the day.

After that I went home for Christmas, and my brother and his partner prepared Christmas dinner like my dad would have done but still nothing felt right. Everyone said I’m doing very well and I will get back to normal soon. But still nothing made sense, I was back to this puzzle in my head where there were missing pieces.

Another hurdle I had to tackle was my daughter, we were very close before I was ill but when I returned home, she was very distant and was scared of coming close to me. She would let me change her or be close to her and that absolutely broke me to pieces. I couldn’t believe it and felt like my daughter didn’t love me anymore.

prithima 8 376x500 - Prithima's Story

Whilst in hospital, my mum had been mainly looking after my daughter because my husband was working far away. My brother and his partner helped her a lot with my daughter, my brother’s partner took my little girl under her arms and treated her like her own girls, and I will never be thankful enough. My brother was a great support to me when I came out of hospital and whilst I was there for my daughter.

My mum had been shuffling between the hospital and the nursery to pick up and drop my daughter in between hospital runs, and everyone at the hospital couldn’t believe how she managed to do so much, and be so strong after what she had being through.

My mum and my brother explained to me that they had made a memorial bench for my dad at the hospice where he passed away, and took me there when I was home so I could understand what had happened and start accepting it.

prithima 9 376x500 - Prithima's Story

My brother also waited for me to return from hospital so we could put my dad’s ashes to rest. My dad always loved the sea, so we decided to release his ashes in the sea. But doing all this and knowing everything, I still couldn’t understand that my dad had passed away.

All I kept asking is “WHY, why did he go?” And “why didn’t he come and see me? Why he didn’t wait for me to get better?” And I still to date blame myself that I couldn’t get better fast enough for him to see me, I just needed a couple of days, all I wanted is his warming loving comforting smile, telling me it’s ok, everything’s alright. I want to tell him so much and see him so much, I get very emotional whenever I sit and think. He is the one person in my life that I would have definitely like to have by my side at this time.

But this is something I’m taking my time in accepting.

When I was told about my dad, this was also the time the doctors explained about my ovaries and that I would not be able to have any children because my ovaries had been removed.

I never expected this with the encephalitis, and was totally shocked and just looked at my husband and didn’t have anything to say. I was born in Mauritius and my grandma had 8 children. Me and my cousins all grew up together, my mum and dad love children, and I love children too.

I used to tell my mum, dad and my aunties that I will have 8 children too: 4 boys and 4 girls. That was my wish, I knew it would not really happen but that’s what I always said.

When I got married I was ready for children, I wanted to have lots to give to my parents because they were already great grandparents to my niece. And they always spoilt kids, and would adorn all children in the family with so much love.

So this were my many shocks, hitting me where it hurts.

I didn’t know how to accept this news and I still don’t. I feel that I’ve let myself down, I don’t feel like a woman anymore, as wrong as it sounds, that’s how I feel. And I look at my daughter and see how much she loves playing with her little cousins, and I feel that because of me she can’t have a little brother or sister.

Every time I look at families growing, and little babies popping up everywhere, it just pulls at my heart. I miss to be a mum again and grow a bump, have a baby grow inside you for 9 months, and once the baby is born, all the joy, tears and love and laughter that comes with it.

Right now I’m starting to accept those big factors that I have lost in my life. But thank fully I have an extremely strong, supporting and loving mum by my side, alongside my best friend, my husband, my soulmate. I have very close members of my family who may be far away but are so close to me and are always there when I need them.

Today I am a stronger person, I have learnt that life can be taken from you and that you should appreciate every moment you have. And I have chosen to do just that, focus on people who are important to me and focus on my future.

I am and will be on medication for a long time, but this is something I have to accept. The two things I have constantly going round in my head are memories of my dad and the sadness of not being a mother again.

But I promise myself that I will put all my love towards my daughter and overload her with so much love, not too much that she gets spoilt but enough for me to feel content.

I don’t know what the future holds but I can say I am a stronger and wiser person who won’t be easily taken advantage of, and will be more strongly independent than ever. 

I am thankful to all the family that were there to support my mum and my family during our difficult times, and we will never forget all that you did.

prithima 10 375x500 - Prithima's Story

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

seal - Prithima's Story

 

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

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Prithima's Story

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Prithima's Story 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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