Patient Stories

Melissa, Age 30, Birmingham, Alabama

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 said I was in a form of psychosis and admitted me to the psychiatric ward. I stayed there for a few days, then had what appeared to be a seizure. The doctors said it was my body giving one last hoorah to save itself. I was then tested by Dr.…

Tanisha, Age 28, Geneva/ London

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 had packed up my life in London and stopped by home in Geneva before setting off to a new start in Hong Kong (little did I know I was about to embark on a completely different type of ‘new start’). It was a summer filled with emotions, saying goodbyes and…

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…