Patient Stories

Elliott, Age 15, Sarasota FL

Sarasota FL

This is my son Elliott. He’s a friendly, soccer-lover and a member of the JROTC Raiders Varsity team of his school. He was in his freshman year trying to adjust to a new school until last September, when he started complaining about a weird taste in his mouth, to the point that he didn’t want to eat because everything tasted weird; then he complained about weird distorted vision, pressure on the left side of his head and not feeling himself. I took him to his pediatrician and he said that maybe he wasn’t eating properly for all the kinds of…

Juliana, 19 years old, Miami, Florida

Miami, Florida

It all started in the first week of my freshman year in high school when I was only 14 years old. I began to get very anxious all the time, I would have fuzzy thoughts and I was not able to concentrate during class. I thought this was all part of the nerve-wreck of starting high school, so I never saw it as anything more. My friends kept telling me that I was very distant and acting strange, but I was in denial. On August 26, 2014, my life changed forever. That day after school I went home and sat…

Tatiana, 18 years old, San Luis Obispo, CA

San Luis Obispo, CA

At only 7 years old my life changed forever. During a family get together in August of 2008 my father found me unresponsive, I was just looking to the side, staring into space. I was taken to the hospital where my family was told it was a seizure. I was kept at Cottage Children’s Hospital in Santa Barbara, CA, and then airlifted to Ronald Reagan Medical Center in Los Angeles, CA because I was getting worse and no one had any answers. There I continued to have seizures, and I behaved like a “crazy person”. I would pull my own…

Megan’s Story, 22 years old, France

France

Hello, my name is Megan, I am French, a student and I am 25 years old. With these few words I will tell you "my story". In 2016, two months after my 22 birthday, I had autoimmune encephalitis with anti-NMDA receptor antibodies; Said like that (put a name on what I got) it gets attention but in actuality until today the vast majority of people I know have never heard of it. In "simpler" terms this disease corresponds to inflammation of the brain; cells normally supposed to contribute to my "well-being" have created antibodies that have attacked my brain. All…

Victoria’s daughter, Age 2-1/2, Tasmania, Australia

Tasmania, Australia

On 19 December 2018 my then two and a half year old daughter had a wee fall/trip in our backyard. No crying came from her so we thought all was good till the same day, hours later we noticed she had a limp on her right side and her right hand was sagging down. By that night, around seven o'clock, I took her to the local hospital and got her checked hoping she hadn't sprained or fractured anything. The doctor and nurse found nothing wrong so told us to come back in 48 hours if it got worse. By the…

Jessica, Age 38, Everton, Missouri

Everton, Missouri

I'm 38. I was working part-time and going to school full time. I was in school to be a respiratory therapist. I started having migraine headaches that I had never had before. The end of 2017 I was at my clinical shift at a hospital when I collapsed in a patient's room having a seizure. I have no memory or knowledge of this, only what I've been told. It took several days before being admitted to the hospital. They wouldn't admit me until I had 3 seizures. My first diagnosis was Herpes Simplex Encephalitis. Which is rare. That took a…

Sherry’s Story, Female, Age 37, Chicago

Chicago

My name is Sherry Baldwin. I was diagnosed with Anti NMDA Receptor Encephalitis in 2009, at the age of 27. I am unable to recall the suffering I experienced during this time. But prior to Jan. 1, 2009, I remember living a normal, flourishing life. I was admitted to the psych division of Northwestern Hospital of Chicago after exhibiting psychotic behaviors. My mother, who was my strong advocate, pressured the doctors into looking deeper into my situation as I did not have a history of mental illness. I was eventually transferred to the main hospital. And after nearly 3 months…