Living with Leprosy
updated 11/10/2008 AT 01:00 AM EST
•originally published 11/10/2008 AT 01:00 AM EST
The news hardly seemed possible—leprosy? "I broke down and cried," says BB, a pretty, popular sophomore at a Baton Rouge high school. "I remember watching cartoons with Jesus and a leper in the corner all huddled up and his limbs would fall off." Her family, friends and teachers were also stunned by the diagnosis. "People are astonished to know this disease is still alive," says James Krahenbuhl, director of the National Hansen's Disease Programs. "They are more afraid of this than of other infectious diseases."
It may seem more like a biblical-era scourge than a modern-day ailment, but there are currently some 6,500 reported cases in the U.S., and experts say that around half a million new cases are diagnosed each year worldwide. Still, leprosy, which attacks skin and the peripheral nerves, is vastly misunderstood. It is not, for instance, contagious, nor does it inevitably lead to a loss of fingers or limbs (see box). Doctors aren't sure how BB, or anyone else, gets the bacterial infection—theories include exposure to armadillos, or airborne bacteria—but if diagnosed early enough, a cocktail of antibiotics will wipe it out before the nerve damage that leads to disfigurement occurs. "Most doctors have only seen it once, in medical school," says David Scollard, acting chief of the Hansen's Disease Center in Baton Rouge. "But it is treatable and curable."
For BB that was some consolation, but not much. On her second visit to the Hansen's clinic, she saw patients with bloated faces and deformed hands—people who started treatment too late. "I told her, 'Don't look at this; it's not you,'" says her mother. "The clinic's psychologist told her, 'What you saw out there is not your future.'" BB e-mailed 10 close friends to tell them about her condition, but soon enough everyone in her Catholic high school knew. She began treatment and was cleared to return to class, but she still had to deal with being a teenage leper, literally. "I saw people staring at my leg," says BB, who took to wearing black tights. "A few girls, if I touched them accidentally, they would say, 'Oh my God, your leprosy!'"
Yet her real friends did more than support her: They lovingly mocked her. "We'd always call her leper, like, 'Hey, leper!'" says Catherine Bondy, 16. "In religion class our teacher was dissing lepers, and I said, 'Hold up; my best friend's a leper.'" At home her parents—Anne, 47, a school librarian, and Steven, 47, who performs echocardiograms—also tried to keep things light. "I told her that when she starts dating, I'm going to tell the boys, 'If you kiss her, you'll get leprosy,'" says her dad, "'so you better keep your hands off her.'"
Today, after six months of treatment, "BB is cured," says her physician Barbara M. Stryjewska, chief medical officer at the Clinical Center. "For her, it's 'I had this disease.'" For five years she'll have annual checkups at the center as a precaution, but a recurrence is highly unlikely. Still, she says, "that's my big fear. I'm scared I'm gonna get it again."
Not that she shies away from talking about what happened; she's even doing her science fair project on it. On a recent Friday night, her friends introduced her to a boy and nudged her to tell her story. "I had leprosy, I'm cured, it's fine," she told the boy casually. He stared back blankly, but BB was unfazed. "When people hear leprosy, they think the worst," she says. "I want to educate the world. It's curable; you can live through this. It's not that bad."