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It typically starts as a light-colored patch on the skin and then spreads, stopping hair from growing on affected areas and short-circuiting sweat and oil glands. Eventually, hands and feet go numb and begin to claw inward, leading to injuries that go unnoticed and become infected because no pain is felt. Sometimes, in the worst cases, fingers and toes are lost or blindness occurs.
"It maims people, it cripples them and it makes their lives shorter because they cannot work and therefore they cannot eat," says Dr. Denis Daumerie, project manager of Neglected Tropical Diseases at the WHO in Geneva, who's been working with leprosy for nearly three decades. "It kills slowly. It leads to discrimination and social exclusion, which in many societies is worse than death."
Leprosy, or Hansen's disease, is arguably one of the most feared maladies ever. It was discovered in a 4,000-year-old skeleton from India, and has continued to disfigure and ostracize those afflicted throughout the ages.
Despite its longevity, much about it remains a mystery. Scientists believe it is spread through droplets from coughing or sneezing during prolonged contact with someone infected, but they are still not completely sure. About 95 percent of people exposed to the germ never develop leprosy.
Before a cure existed, rampant fears ran wild that leprosy could easily spread through the air or by touching someone infected. Many victims were forced into so-called leper colonies, which were often faraway areas cut off from the rest of the world. One of the most well-known sites was on the Hawaiian island of Molokai, where only a few former patients still remain, voluntarily.
But active leprosy communities still exist in several countries, mainly in Asia, including Vietnam and China. Hundreds of colonies remain in India, home to half of all new cases identified last year, where even the healthy children of former patients are still discriminated against.
"Leprosy remains a word that's associated with stigma and fear -- even mainstream newspapers still use the word 'leper' to denote somebody who's an outcast," says Dr. Diana Lockwood, a professor at the London School of Hygiene and Tropical Medicine who has studied the disease for 30 years. "Nobody should need to go into a leprosy community now because we have good outpatient-based treatment."
But in East Timor, and specifically Oe-cusse Enclave, leprosy is not feared as it is in richer, more educated places. Many patients here tell their friends and neighbors when they've been diagnosed, and the community becomes their support system.
"I have no problem with my schoolmates," says Paulo Colo, 17, who is finishing a nine-month course of treatment after noticing the same patches on his skin that his father and brother suffered. "They don't keep their distance from me."
No one shuns or fears Quelo either, but the remoteness of his house keeps visitors from coming around. With no wheelchair or any form of transport, the disease has jailed him inside a hillside shack that lacks water, electricity or even a chair.
But he's not alone. His watery eyes spark as he talks about his devoted wife and four daughters-in-law who care for him daily.
"If she didn't love me, then maybe I would have passed away a long time ago," Quelo says of his wife, who was out gathering food for dinner. "Our promise is: I need you and you need me, and then we take care of each other until the end of time."
He still feels pain in his stick-thin legs and his lower back often aches from sitting all day with no support. He can't read and the days are long, but he says his faith has kept him strong.
Like most people in East Timor, he was raised Roman Catholic. Every day he draws on sermons heard years ago in church. He smiles as he recalls the biblical story where Jesus heals 10 leprosy patients, with only one returning to give thanks.
"Even though I am suffering like this, I have never blamed my God. I am satisfied with my life even though I am a leprosy patient," says Quelo, a head of gray curls surrounding his worn face. "I am thankful that he has taken care of me into old age."
He then begins to drag what's left of his body back into the hut. As he moves one foot, then one arm at a time, the sound of hard breathing slowly fades into the darkness.
Copyright 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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