Patient Stories

Victoria’s daughter, Age 2-1/2, Tasmania, Australia

Tasmania, Australia

On 19 December 2018 my then two and a half year old daughter had a wee fall/trip in our backyard. No crying came from her so we thought all was good till the same day, hours later we noticed she had a limp on her right side and her right hand was sagging down. By that night, around seven o'clock, I took her to the local hospital and got her checked hoping she hadn't sprained or fractured anything. The doctor and nurse found nothing wrong so told us to come back in 48 hours if it got worse. By the…

Jessica, Age 38, Everton, Missouri

Everton, Missouri

I'm 38. I was working part-time and going to school full time. I was in school to be a respiratory therapist. I started having migraine headaches that I had never had before. The end of 2017 I was at my clinical shift at a hospital when I collapsed in a patient's room having a seizure. I have no memory or knowledge of this, only what I've been told. It took several days before being admitted to the hospital. They wouldn't admit me until I had 3 seizures. My first diagnosis was Herpes Simplex Encephalitis. Which is rare. That took a…

Sherry’s Story, Female, Age 37, Chicago

Chicago

My name is Sherry Baldwin. I was diagnosed with Anti NMDA Receptor Encephalitis in 2009, at the age of 27. I am unable to recall the suffering I experienced during this time. But prior to Jan. 1, 2009, I remember living a normal, flourishing life. I was admitted to the psych division of Northwestern Hospital of Chicago after exhibiting psychotic behaviors. My mother, who was my strong advocate, pressured the doctors into looking deeper into my situation as I did not have a history of mental illness. I was eventually transferred to the main hospital. And after nearly 3 months…

David’s Story, Male, Age 51, U.S.A

U.S.A

In January 2007, David Benincasa, a Philadelphia-based engineer, musician, avid golfer and father of two came down with the flu and the shakes. For a man who uses his hands, this was definitely a cause for worry. By Memorial Day weekend of that year, David’s symptoms had gotten progressively worse. His speech was beginning to slur, the shaking became more severe, his vision was blurry and he was unable to walk. David and his wife, Carla, whom he describes as his “support system”, went to their local hospital. Doctors ran a battery of tests, but all of them came back…

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…