Patient Stories

Angie, Age 39, Cincinnati, OH

Six months ago I nearly lost my life to Anti-NMDA Receptor Encephalitis. A mostly rare condition, however very often misdiagnosed, therefore making it rather challenging to fully determine the scale of those truly affected by this life threatening and horrific condition. I am by all accounts a healthy, active, and happy 39 year old woman. I am a wife and a mother to two beautiful young daughters, ages 4 and 7. It was July 16th, 2019, a normal Tuesday afternoon. I work from home and was on a typical business meeting call when the first slurred word came out of…

Aleena, Age 23, Maryland

Hey! I'm Aleena. I was working at a preschool at the time and was attending a community college. I was really struggling with depression and suicidal tendencies, which impacted my academic performance. I started feeling drained around December 2015 and once January 2016 came, I hardly had the energy to move. I remember texting my friend and telling her my head was pounding, which is the same thing I told my mom when I woke her up one night mid-January. The last few memories I have are of me laying in my bed, feeling as if though a metal door…

Yasmin, Age 18

Yasmin became ill on 10/06/2011 and was diagnosed with Anti NMDA Receptor Encephalitis. On the 6th day she stopped breathing and was put on full life-support where she remained for 15 long months sedated with Propophol, Ketamine and other medications. Repeated MRI scans failed to locate the tiny teratoma that was on her ovary. After 11 months an internal vaginal scan located a teratoma on her right ovary. Yasmin had both her ovaries removed the next day. Sadly, her body was beginning to break down and her antibodies remained raised until her death on 16/09/2012. I donated her brain to…

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…