Patient Stories

Mari, Age 55, Chicago Il

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 do luminosity daily. I find difficulty multitasking and have not been able to return to work. Although it has been 2 years I still find plenty of things to work on including my memory, problem solving and adjusting  to a life that was much different than before. I am struggling…

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 the hospital, I lost verbal communication and physical abilities. MY memory no longer exsisted. Two years later, the fatigue I experience is consuming. The headaches come and go, but often numbness to my right side of my face still remains. It just seems I feel differently than before this illness.…

Evelin, Age 25, Colombia South America

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 the airplane she was completely psychotic. She tried to punch her mother in the face and then tried to jump over the staircase. Colombian police-ambulance took her to a local hospital and then she was later transferred to a mental hospital. Several days after entering the mental hospital Evelyn developed seizures, a…

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…