Patient Stories

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

San Jose, Costa Rica

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 y quien estaba al cuidado no se dio cuenta de la importancia de su estado por lo que duró 3-4 hrs en ese estado. Al llegar lo trasladamos al Hospital Nacional de Niños, lo internaron por 3 días y salió sin medicamento porque después del TAC su cerebro no presentaba…

Mercedes, Age 37, España (in Spanish)

Spain

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 estudiaron..mandaron mi líquido encefaloraquideo al H.Clinic de Barcelona pero las muestras se perdieron …y tras tratarme con 1000 medicamentos porque la enfermedad no estaba descubierta..remonte..tarde unos 2 años en volver a la normalidad físicamente..porqie perdí capacidad intelectual..memoria a corto plazo..me quedaron psecuelas epilepticas..etc..intenté resurgir de la nada con tan poca…

Lucy’s Story, Age 23

United Kingdom

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 answers. I was placed in a mental hospital [incorrectly] for three months as doctors assumed I was suffering a mental breakdown and thus filled me with psychotic drugs but gave no treatment to the physical illness (my body’s immune system mistakenly attacked healthy brain cells, leading to inflammation of the…

Aubrie’s Story, Age 10

South Carolina

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 mal seizure and we had to call an ambulance. We were taken to the hospital but sent home with an increase in her seizure medicine. I had noticed that Aubrie was getting weak on her left side and would just fall while walking so I called the neurologist and we…

David’s Story, Age 51, Toronto

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 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…

Kharina’s Story, 21 years-old, Florida, USA

Florida, USA

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…

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…