I am a survivor of herpes simplex encephalitis which I got in December of 1995. I was out of work for over three months but when I got back, because of who I worked for, I was allowed access to the internet. The first thing I looked up was encephalitis and found a support group run by Debra Caires for the National Encephalitis Foundation which no longer exists. I manually took over receiving/copying/pasting all emails and then when Yahoo offered free 'groups' I signed up and all of the few members joined as well. Wendy Station, also a survivor, contacted me and we became a nonprofit organization, Encephalitis Global, Inc. (www.encephalitisglobal.org). That was about 10+ years ago. Since then, our support group is online through Inspire and we have almost 2000 members worldwide. Enncephalitis is a very rare illness and most doctors have never seen a case so when you as a question about the residuals, they don't really have an answer. Our members are survivors and their caregivers. We ask questions and give advice and let our members know we aren't doctors but a support group. Our group is very active and we have over 200 messages per week.
We are a support group for survivors of all types of encephalitis, their caregivers, families and friends. We discuss what the residuals of encephalitis are and how to function. Most of us have severe headaches everyday, memory loss, are tired, can't function. Many of us were unable to go back to work and live on disability.
We are a worldwide organization and, for those interested in attending, we will be having a 3-day conference in November (see our website for details).
I am a survivor of HSE and am also one of the founding members of this support group. I took over another group from a woman in Califiornia (Debra Caires) and transferred it to a yahoogroup and Wendy Station and I formed this group. We have reached survivors and caregivers worldwide and each year we try to have a meeting so that others can meet other survivors face-to-face. You cannot believe how comforting it is to know that you are not alone. Encephalitis is a very rare disease, hard to diagnose and most doctors have never seen a case of it so, to survive is a miracle in itself. The day someone joins this group, they never feel alone again.
When I had encephalitis in 1999, it was near to impossible for my family to find helpful information. Some professional medical information could be found, but it was impossible for non-professionals to decipher.