Patient Stories

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),…

Marks Story, Age 62, U.S.A.

U.S.A.

My wife Sherry loves Ocean City, NJ more than anyone I know. It might be for Mallon's many different types of sticky buns or an awesome slice of pizza from Mankos & Mankos. Her beach- bag packing skills are legend. We try to visit there every summer and make day trips anytime of the year just to "restore our souls" and to get a slice of Pizza. When the caller ID showed that my neurologist of some twenty years was calling me at nine o'clock at night in the middle of August 2015, I suspected that our summer vacation was…