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Melissa, Age 30, Birmingham, Alabama

I had my daughter in March of 2016. By August, I was having severe delusional thoughts, hallucinations, and aggressive behavior. My parents took me to the hospital and had me admitted thinking I was having hormonal issues after spending the day with me and watching my behavior. The hospital then…

Tanisha, Age 28, Geneva/ London

I never thought I would write about my experience because, to be honest, I’m not sure what really happened. However today (22nd February) appears to be World Encephalitis Day and I thought it would be fitting to share my story about such an unfamiliar yet deadly disease. Summer 2018, I…

Mari, Age 55, Chicago Il

My name is Mari Davis. I am a nurse who was diagnosed after having seizures at work. I was treated with plasmapheresis, steroids and IVIG. I initially had a short inpatient rehab stay, then went to day treatment. I am now trying to build up my strength and stamina. I…

Denise, Age 54, Nova Scotia

Encephalitis has been part of my life for two years. Its been a confusing journey and many unanswered questions. I was seen by medical doctors over a two week period. Unfortunately, I wasn't diagnosed quickly. I was then hospitalized for one month. By the time I arrived by ambulance to…

Evelin, Age 25, Colombia South America

Evelyn started out acting very strangely and complaining of flulike symptoms. Complained that she was getting sick from and aunt bite on her left arm. Slowly developed into psychosis which I thought was acute schizophrenia left the United States to return home to Colombia with her family on an emergency basis. Upon exiting…

Andrés Felipe, Age 8, San Jose, Costa Rica (in Spanish)

Hace un año, 24 enero 2018. Nuestro hijo cambió nuestras vidas. Sufrió un fuerte dolor de cabeza y su mirada y rostro se quedaron fijos y perdidos hacia la derecha y relajación de esfinter- orinó por lo que nos indicaron que convulsionó y no sabíamos. Mi esposo y yo trabajabamos…

Mercedes, Age 37, España (in Spanish)

En el año 2001 con 19 años de edad llegaba de estudiar de la universidad y sentí un fierte dolor de cabeza que me acompañó todo el día, no tenia ganas de comet y me fuy directa a dormir.Mi madre me encontró convulsionando y con mucha fiebre.Estuve en coma inducido..me…

Lucy’s Story, Age 23

A lot has changed since I last posted – I’ve come back to university to finish my third year after two years out having suffered a brain disease called anti NDMA receptor encephalitis. I have a much better understanding of what happened to me now, through months of searching for…

Aubrie’s Story, Age 10

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…

David’s Story, Age 51, 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…