Encephalitis Survivors: Lonely Battles to Reclaim Lives


Initial Symptoms Pass, Replaced by Ongoing Deficits

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 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.

"I'm hoping that as our organization increases awareness, future encephalitis survivors are treated like stroke victims: swift medical attention and insurance coverage of necessary (ongoing) treatments," said Dennis, who is now the chief marketing officer of a large company.

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 8 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 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."

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