Patient Stories

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…

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…

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…

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…

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…

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…

In January 2007, David Benincasa, a Philadelphia-based engineer, musician, avid golfer and father of two came down with the flu and the shakes. For a man who uses his hands, this was definitely a cause for worry. By Memorial Day weekend of that year, David’s symptoms had gotten progressively worse. His speech was beginning to slur, the shaking became more severe, his vision was blurry and he was unable to walk. David and his wife, Carla, whom he describes as his “support system”, went to their local hospital. Doctors ran a battery of tests, but all of them came back…