Patient Stories

Aubrie’s Story, Age 10

South Carolina

Our nightmare started in April of 2017. My then 8 year old daughter, Aubrie, started having unexplained partial focal seizures. We took her to the ER and they kept us for 3 days and diagnosed her with epilepsy. After we were home for a few days, she had a grand mal seizure and we had to call an ambulance. We were taken to the hospital but sent home with an increase in her seizure medicine. I had noticed that Aubrie was getting weak on her left side and would just fall while walking so I called the neurologist and we…

David’s Story, Age 51, Toronto

Toronto

In what might be the most ironic comment ever, I’m of two minds. One, I’m a guy who is a statistical anomaly having survived if not prospered from a brain disease that should have killed me, and two, I’m a guy who doesn’t want to be defined as “the guy who survived that brain disease that should have killed him”. I probably should take a step back and explain how this all started. In February 2013, I had an episode that, well, was unusual to say the least. I was driving with my family on a highway to an event…

Kharina’s Story, 21 years-old, Florida, USA

Florida, USA

On November 19th, 2017, Kharina, 20 year-old and 3rd year pre-med student, started with intenseheadaches which were not going away with over-the-counter medicines. We rushed her to the ER that night, and after running some tests on her, the doctor said she was fine and sent her back home to get some rest. After 2 days, November 21st, the headache came back, but this time more intense and I rushed her back to the ER and, by the time we got there, she had started blinking her eyes. We were told that her eyes blinking was indicative of seizure activity and…

Jett’s Story, 18 years

Arnhem, The Netherlands

My name is Jet and I am 18 years old and I live in Arnhem, the Netherlands.  I’m still in recovery from anti-NMDA receptor encephalitis, in a medical rehabilitation center. On Christmas Eve, 2015, I got my first episode and by early 2016 I deteriorated more and more. After scans and testing of cerebral spinal fluid, they found out that I had Anti-NMDA. I was treated with lots of prednisone and they also found a tumor in my ovary but they couldn’t find where the disease came from. In summer 2016, they said after lots of prednisone treatments and talking…

Alessia Bellino, Italy, 31yrs (2015)

Italy

The onset of the disease I was a normal, healthy 31-year old woman, happily married, a hard worker, an anthropologist by training; I loved to run, spend free-time with my family and friends, travel and draw comics for hobby.No one could suspect what would happen to me. At the beginning of 2015, I began to feel moody and not myself. I was depressed, very tired, I often had bad headaches, and sometimes I had insomnia. I became a little misanthropic which was strange for me and for my beloved, but I thought that this was caused by work-related stress or…

The Story of G, 2007-2017, New Zealand

New Zealand

(2007) My daughter 13yrs old at the time, appeared in a coma-like state with extreme catatonia &was admitted in child psychiatric ward. 6 long years drugged-up & treated as a psychiatric patient, diagnosed with bipolar. (2013) Age of 18yrs, she died while still in mental health, psychiatric care before rushing her to medical ward & put on life support where she stayed 11mths, lumber puncture, diagnosed NMDA receptor encephalitis, teratoma found & over a duration both ovaries were removed, plasma, chemo, steroid, alemtuzumab to no avail. She lay, tied to a bed a further 7mths in HDU. Drs waited expecting…

Blake’s Story, Age 15, USA

Chrystal Carpenter

USA

My name is Chrystal Carpenter. I am a single mom and a business owner. My son, Blake, turned 15 in January 2017. He was born healthy, but his medical issues began when he was diagnosed with Meningoencephalitis at just three weeks old. As a result of that, he has Epilepsy and Cerebral Palsy.  It took 13 years but doctors finally identified the exact point in his brain where the seizures originated. On July 29th, 2015 he underwent brain surgery to remove that portion of his brain with the hope that it would end his seizures. I cannot begin to describe…