TIMOR-LESTE: Living with leprosy

DILI, 20 January 2010 (IRIN) - Twelve years ago, Luis Neves started noticing symptoms that would mark the beginning of a lifelong struggle with leprosy.

"I was carving wood when I felt it in my hands. They were itchy, and the feeling wouldn't go away," the 68-year-old said. "It felt like water was bubbling up in my skin."

A few months later, Neves travelled to Dili, the Timorese capital, for help. But hospital staff did not know what to do, and turned him away.

The disease continued to eat away at his body, and Neves was not treated until late 2009. He was left partially blind and the fingers of his right hand are curled into a claw shape.

Endemic

According to the World Health Organization (WHO), leprosy - caused by the bacteria mycobacterium leprae - remains endemic in Asia's newest, but poorest nation.

Leprosy continues to be found all over the world - but only in Brazil and Timor Leste is it, despite being completely treatable, still considered a public health concern.

Since 2004, 1,300 cases have been reported, with about 200 to 300 new cases annually.

At present, 138 people are having treatment, the UN health agency says.

"Leprosy doesn't kill someone, it just disables them," Natalie Smith, head of the Timor-Leste Leprosy Mission International (www.leprosymission.org TLMI ) told IRIN.

Left untreated, the disease damages nerves in the feet, hands and eyelids, making them vulnerable to cuts and infections that eventually eat away at the tissue, she explained.

"If someone gets it when they're 20 and they lose sensation, it's hard to stay totally damage-free through 60 years of wear and tear, and cuts and burns and blisters in an unclean environment."

Rooting out leprosy

But Timor-Leste's Ministry of Health vows to rein in the high rates of leprosy - and progress is being made.

In 2004, the overall ratio of infection was 4.7 per 10,000 people, while in 2009, that number fell to 1.3 per 10,000, WHO reported.

Following a training programme launched in 2003 involving more than 360 health ministry staff with the skills needed to diagnose and manage the disease, leprosy is confined to four of 13 districts - Bacau, Dili, Coval Lima and Oecusse, an isolated enclave inside Indonesia.

Even so, WHO officials say the disease must be less than one per 10,000 to be considered "eliminated".

In an effort to do just that, the government has launched a radio and television campaign to help people learn about leprosy and prevent its spread.

Treatment challenge

According to health experts, leprosy is relatively easy to treat with a combination of antibacterial drugs known as multidrug therapy (MDT): clofazimine, rifampicin and dapsone.

Moreover, treatment provided in the early stages can avert disability.

After one month of treatment, patients are no longer contagious, and damage from the disease stops after a few months.

Yet in rural Timor-Leste, where about 75 percent of the country's 1.1 million inhabitants live, diagnosing patients and ensuring treatment remains a challenge.

"The problem here is it's not really obvious. You don't see people with leprosy in the street. You don't even see beggars with leprosy because [there isn't] really a begging culture," TLMI's Smith said. "And the terrain makes it quite difficult to get to the rural areas where most [sufferers] are."

Although in many countries, people with leprosy are shunned and face a lifetime of isolation, such stigma does not exist in Timor-Leste, says Salvador Amaral, leprosy assistant for the WHO.

"In the traditional way of thinking here, leprosy is not considered to be a disease, but a result of eating certain foods, like fish, or a curse from God."

Despite that, misinformation can present a dangerous obstacle to timely treatment and diagnosis, he added.

Meanwhile, for those whose treatment came late, life can return to normal over time.

Under a government programme supported by TLMI and WHO, Neves has received occupational therapy to help him cope with his disabilities.

"I'm able to grasp things with my hand, and I have learned how to carefully check for wounds on my hands and feet," he said. "Now I can even work a little."

In 2008, 249,007 new cases were reported worldwide, down from 620,638 in 2002, <http://www.who.int/wer/2009/wer8433.pdf> according to the WHO.

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