Patient Stories

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…

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…

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…

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…

(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…

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…

Her Mind speech Dear World, I’m still basking in the afterglow of a night filled with love, community, good food, soulful music and awareness/fund-raising about Anti-NMDA Receptor Encephalitis. As the adrenaline starts to slowly fade, I thought I’d share the words I spoke last night, on the off chance somebody out there couldn’t make and is interested in reading them, or somebody heard me speak last night but wants a written copy of what I said. Thanks for the love, laughter and tears last night. My heart is full of your love today, and I know I will carry that…