East Timor is one of the few remaining countries where leprosy is endemic, and one of only two in Asia where it has yet to be eliminated. The government has declared war on leprosy, and vows to eliminate it this year.
Florindo di Silva started feeling pain in his eyes four years ago. The 60-year-old father of six says he went to a doctor in the East Timor capital, Dili, but no treatment was available. The disease that caused di Silva to lose vision, and his hands and toes to go numb - turned out to be leprosy.
He says he can walk a little bit, he can chop wood, but it hurts. Right now, his hands cannot do anything. Di Silva says his eyes and head hurt every day, and he is not strong enough to cut coconuts with a knife.
According to the World Health Organization, di Silva is one of about 1,300 new cases of leprosy that have been detected in East Timor since 2004.
Health officials say the number of undocumented people living with disabilities caused by leprosy is likely three times higher.
Some progress has been made. In 2004, the overall ratio of infection was 4.7 per 10,000 people. In 2009, that fell to 1.3 per 10,000.
The decline is due in large part to a program that blanketed the country with hundreds of health ministry staff members able to diagnose and manage the disease.
One of those health workers, Jose Pereira, works at a clinic where he monitors di Silva and about 12 other patients with leprosy.
Pereira says if his patients do not come to the clinic to get medicine, he goes to their houses in the villages to give them medicine. But, he says, they often ask for food, and he does not have any to give, and it is very difficult.
Leprosy is relatively easy to treat with a cocktail of antibacterial drugs known as multidrug therapy. After taking the medicine for one month, patients are no longer contagious, and damage from the disease stops for good after a few months.
Poverty - a key challenge
But poverty is a key barrier to eliminating the disease. Natalie Smith, the country leader for the Leprosy Mission in East Timor, says the bacteria that causes the disease is endemic here, and flourishes in a population that is largely isolated, malnourished and living in unsanitary conditions.
"It really thrives where there's poverty, poor sanitation, poor diet and poor hygiene and those sort of contribute to affect the people living in that environment's immune system, so when their immune system is compromised, they're more susceptible to catching leprosy," said Smith.
In rural East Timor, where about three quarters of the country's 1.1 million residents live, diagnosing patients and ensuring treatment remains a challenge. Smith says failing to identify the disease and treat it perpetuates a crushing cycle of poverty.
"I think it needs to be a priority because of the disability that it produces. And there's been a lot of studies on the burden of disability now and the fact that if people with disabilities are assisted and helped they can actually add to a country's economic viability rather than economic demise. But the longer we delay in treating someone, the more likely they're going to get nerve damage and that's going to lead to long-term disability," she said.
Leprosy campaign
The government has vowed to eliminate the disease this year. The head of East Timor's Leprosy Program at the Ministry of Health, Jose Liu Fernandes, says to do that, the government has begun a radio and television campaign about the disease and how to prevent it.
He says East Timorese do not yet know enough about the disease, so they are surprised when they contract it. Fernandes says they need to teach people that if they start feeling numbness in their hands, it could be leprosy.
In many countries, people with leprosy are shunned and face a lifetime of isolation.
But Salvador Amaral, with the World Health Organization, says there is no such stigma in East Timor. Salvador says traditionally here, leprosy is not considered to be a disease, but a result of eating certain foods, like fish, or a curse from God.
Back in the outskirts of Dili, 22-year-old Joao Godinho Sarmento recounts how he started noticing light patches on his arms six years ago. It turned out to be early signs of leprosy. Doctors caught the disease before it caused serious disability.
Sarmento says his life is pretty normal. He does not have problems at school, and no one considers him to be different or disabled. He hopes other people who have this disease can realize they are not different from anyone else.
Sarmento studies mathematics at the national university, and hopes to become a teacher or an engineer.
