Encephalitis. What a mouthful of a word. Ever heard of it? I hadn’t heard of this 12-letter word until 6 years ago. When the doctor said it, I kinda shrugged, thinking “thank God it wasn’t a stroke.” His expression changed as he explained that encephalitis is a form of brain injury, quite similar to a […]
This site serves encephalitis survivors and those with a loved one impacted by its aftermath. You’ll want to follow this site if you are looking for factual information about encephalitis, upcoming research or for reading the experience of those impacted by this cruel illness.
Encephalitis (swelling of the brain) can be caused by many things – bacteria, virus, a blow to the head … but unfortunately more than half of causes are unknown. It is an expensive illness – creating hospital costs of $2 billion a year in the U.S. alone. The residuals can financially ruin a family due to the wide range of neurological deficits resulting from encephalitis, a little-known brain injury.
According to the CDC, 75% of traumatic brain injury (TBI) cases are of mild severity, and are considered to have a good outcome within a few weeks. By contrast, all cases of encephalitis require a hospitalization, and encephalitis is considered to be in most cases a severe [brain injury]. And this illness strikes people of all ages and health 20,000 times a year in the U.S. – 500,000 globally.
A few facts about encephalitis:
- Delayed diagnosis can impact mortality
- No standardized treatment protocols exist today (but stay tuned for upcoming research to provide guidance in recovery)
- Roughly 20% of encephalitis victims die
- More than 50% never return to the workforce
- Survivors endure chronic neurological disorders, similar to stroke
- Imaging is often inconclusive, sending some very ill patients home as “crazy”
Becky Dennis is a survivor of encephalitis and as a patient advocate, is a trusted “go-to” resource for scarce information about this rare syndrome. Tenacious drive and compassionate spirit. Putting encephalitis on the map.
When death stared me in the eyes 8 years ago this week, I never contemplated survival from encephalitis. I fast forwarded to milestones I assumed I’d miss … my son’s graduation, his career, his choice in who he’d marry. Being with my family during holidays. Traveling to new countries. Retiring. If I were to survive, […]
Warning to readers. This is a story of 56 years of a “mistaken identity.” A miracle, if I may proclaim it. In this fourth issue of a series on “success post encephalitis,” you might find yourself amazed by the resilience of the human spirit. In November 2011, I had the momentous occasion to meet Carol […]
“Still Alice” captures the dramatic nature of dementia in its recent release in theaters. Julianne Moore gracefully depicts the real-life trauma of forgetting and the unfortunate shame that accompanies that circumstance. If years lend us the opportunity to grow older, most of us will gradually meet this tragic and startling experience head on. As a […]
Brainstorming among the brain injured … now there’s an interesting way to spend a Saturday afternoon! At our Nov. 22nd survivor/caregiver meeting, these were the top mentions of helping us help ourselves. That’s what I call a successful brainstorm. Top tips: Listen to your body. Learn to pace yourself. It sounds so simple, yet we […]