Encephalitis Survivors: Lonely Battles to Reclaim Lives
Survivors of brain disease battle to get their lives back.
Feb. 29, 2012— -- Becky Dennis delivered one of her best presentations while on a 2008 business trip to India. But within two hours of giving her talk, she couldn't put together a sentence or move her legs.
"I knew the words in my head," recalled Dennis, now 42, "but I didn't know how to communicate them. When I stood up, I didn't know how to walk."
Doctors were at a loss to pinpoint the source of her devastating illness.
Back in the states, Dennis' health declined. She kept losing weight, couldn't taste or smell anything, and was sleeping all the time. She shuttled around to more than a dozen doctors over the next 30 months and was variously diagnosed with stress, a stroke, and a complex migraine. Experts also told her that it was all in her head, she said in an interview Tuesday.
Ultimately, Dennis found her way to a vascular neurologist who diagnosed her with encephalitis. "I felt vindicated, validated," she said.
Dennis has become an activist for the nation's community of encephalitis survivors, an overlooked group of formerly healthy, productive men and women.
Encephalitis, which affects an estimated 20,000 Americans a year, most often results from viral and, less frequently, bacterial infections that invade the brain. The resulting illness, which may also stem from autoimmune problems as well as HIV, can range from mild to deadly.
Many encephalitis patients become depressed, dejected and struggle to pay bills while grappling with disorientation, memory loss, and trouble speaking and understanding others, according to a report entitled: "I'm Not the Me I Remember: Fighting Encephalitis," released this week in conjunction with Rare Disease Day 2012, which is today. The report was compiled by Inspire, which provides online communities for a variety of illnesses, and Encephalitis Global Inc., a nonprofit patient advocacy group founded in 2004.
Dennis now sits on the organization's board. While she is happy and vibrant today, after her long and difficult recovery, Dennis still struggles with ongoing deficits, such as trouble concentrating, poor short-term memory and difficulty finding the words she wants to say.
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