Patient Stories

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…

David’s story, 31 years old

By Linda Nourse

Montréal, Qc.

ANMDARE Foundation Benefit Concert Speech (download pdf document) Peace be to earth and to airy space Peace be to heaven, peace to the waters Peace to the plant and peace to the trees! May all the powers grant to me peace! By this invocation of peace may peace be diffused! By this invocation of peace may peace bring peace! With this peace the dreadful I now appease, With this peace the cruel I now appease, With this peace all evil I now appease, So that peace may prevail, happiness prevail! May everything for us be peaceful! [Atharva Veda XIX] Vedic poem…

My 5 year old daughter case of Anti NMDA

Arani Marquez Montufar - Monday, June 20, 2011

Everything began end of March 2011 when she complained about a tingling on her right foot. After a week she began to lose her balance and her toes were moving. That Sunday we decided to bring her to emergency to our local children`s hospital. After doing some testing, they told us she was going to be admitted for a few days to have an MRI and some other tests. My heart sank, they said not to worry that probably it was Sydenham Chorea, a rare illness but treatable and it would go away in a few months. How wrong they…