Encephalitis Survivors: Lonely Battles to Reclaim Lives

Comstock/Thinkstock(BOSTON) — 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 on Wednesday. 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.

After initial symptoms like headache, fever and vomiting, which easily can be mistaken for the flu, encephalitis may cause confusion, seizures, weakness, paralysis and hallucinations. The symptoms are typically treated with antiviral medications.

But some insect-borne varieties, such as Eastern equine encephalitis, cause death or disabling effects in between 70 to 90 percent of cases, said Dr. H. Gordon Deen, a neurosurgery professor at the Mayo Clinic in Jacksonville, Fla., who reviewed the report’s findings for Inspire and Encephalitis Global.

Patients like Dennis, who survive the first month of acute illness, frequently fight new battles as they try to resume their daily lives. It’s often a struggle, as they deal with residual effects of so-called acquired brain injury, such as those caused by a head injury, stroke, the cutoff of oxygen after cardiac arrest, inadvertent lead or mercury poisoning, or the effects of meningitis — another form of brain inflammation, Deen said.

Unfortunately for many patients with encephalitis, often doctors haven’t seen many cases and don’t know the telltale symptoms, and many patients may not find their way to the neurologists and other specialists who do.

And encephalitis can be particularly difficult after it is diagnosed and treated since, after the initial acute illness passes, some patients are left looking normal but suffering from the silent ravages of the infection. Health insurers may deny longer-term rehabilitative care, including comprehensive speech, physical and occupational therapy that can improve recovery.

The new report includes responses from an online survey completed by more than 250 members of the encephalitis support group, slightly more than half of whom were survivors; the rest were caregivers. More than half of the survey group patients said they suffered from lack of concentration; more than a third from speech and language deficits. Of the 150 survey respondents who were working before becoming sick, 43 percent did not return to work; 20 percent were working again but in less demanding jobs and eight percent reported losing a job because of poor performance.

The report includes several workplace tips on organization and managing distractions; they include participating in one conversation at a time, working late at night to avoid interruption, turning off TVs or radios while communicating with fellow workers, and using extensive notes during public speaking.

By the time Dennis found her way to Dr. Guy A. Rordorf, a vascular neurologist at Massachusetts General Hospital in Boston, she tired of hearing that her symptoms were psychosomatic.

Rordorf, however, said she had been infected with encephalitis, a potentially fatal brain inflammation. Her particular type, Japanese encephalitis, likely came from a mosquito bite overseas.

“I’m so thankful I survived,” said Dennis, who attributes where she is today to finding the right doctor.

Dennis also says she is grateful for support from her online support group “family,” and her real family: husband Gary, a golf pro, and her sister, Angela Martin. “It’s great to have a therapist, but also nice to have somebody who knows you to the core.”

Copyright 2012 ABC News Radio