Those affected by encephalitis – whether patient, family or friend – know and experience its isolating nature. Although each year encephalitis impacts 20,000 people in the United States and 500,000 people globally, it tends to be a hidden, and often overlooked, illness. Encephalitis Global’s discussion forum is the largest online global support network with more than 3,000 members worldwide. The Encephalitis Society also offers a support service including “Connections,” a project that links people who have been affected by encephalitis.
Both of these groups provide a place of understanding and support for encephalitis survivors and caregivers, as well as the bereaved. Participants share tips for recovery, offer a safe place to vent frustrations, and provide a healing sense of belonging that comes through connection with others who “get it.” Additionally, Encephalitis Global, the Encephalitis Society and a few other organizations offer in-person meetings and conferences throughout the year in a variety of geographical locations.
Survivors and their families gain an amazing sense of hope and resolve by connecting with others who know and understand the encephalitis experience. Following are links to information on gatherings, conferences, and events that provide this sort of connection:
Following are links to videos, reports, tips, and stories from survivors and their loved ones: