Patient Stories

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…

Emily Louise’s Story, Age 22 at onset, Vancouver, B.C.

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…

Anisha’s Story, current age 22 (first diagnosed at 19, relapsed at 20), Mississauga, Ontario

Mississauga, Ontario

59 D. the transcript said, and I shrugged it saying university is always difficult, the same person who would be upset over 89 in high school. A lot of things had changed over the period of 3 months. My friends, lifestyle, attitude, myself but I felt it was just me growing up. I am still unclear on if it was the claws of a dreadful sickness slowly getting hold of me as I was oblivious to any change. One night, mid-semester of winter 2014, my second year, it was a very cold night I remember because I had two comforters…

Kimberly’s Story, Ohio, Age 27

Ohio

My story starts in late 2011, in the fall. I was a 27-year old mom of one, married for 2 years and by most standards living a "normal life". I started noticing red patches that would creep up my chest, neck and face. It would be on one side of my chest and came on randomly. I was also having mild breast pain. I then started experiencing bouts of insomnia. My family doctor sent me to another, who did a biopsy thinking it was a form of breast cancer. Cancer runs in my family (both sides and many different forms),…