Saturday, December 4, 2010

A cruel medical condition with an unfortunate name

By Aaron Gell,

Hillenbrand has chronic fatigue syndrome (CFS), a cruel medical condition with an unfortunate name that fails utterly to do ­justice to an often debilitating array of so far unexplained symptoms, including muscle pain, unrelenting exhaustion, digestive problems, environmental hypersensitivity, occasional fevers, and that aforementioned vertigo.

“Laura is on the more severe end of the spectrum,” says Fred Gill, MD, a noted specialist in ­infectious disease at the National Institutes of Health, who treated her for many years. “It’s very serious. It stops people’s lives.”

As a child growing up in Bethesda, Maryland—the daughter of a lobbyist ­father and child-psychologist mother—Hillenbrand was a hard-core jock. She swam competitively, spent her weekends riding and grooming horses on her dad’s farm in rural Maryland, and became such an avid tennis player that when she enrolled at Ohio’s Kenyon College, she chose a dorm based on its proximity to the courts.

She was 19 when she became ill on a road trip back to school after spring break. ­Feverish, her glands and stomach swollen, she soon found herself unable to walk, much less ­attend class, and so withdrew from school and returned home to Maryland.

Except for Flanagan, her boyfriend, who stuck by her, Hillenbrand’s tight circle of college friends seemed to forget all about her, and her family offered a collective shrug.

The isolation was devastating. “It’s like you go to another place, like you’re not
on this planet anymore,” Hillenbrand says. “You reach a level of despair and suffering where you just don’t feel like the rest of the world.”

“She didn’t get the family support she should have,” says Hillenbrand’s sister Susan Avallon, a script reader. “That’s one thing I still feel bad about. It took years, ­unfortunately, to find out how bad it was.

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