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Facing the stigma of leprosy

Leprosy patients in Indonesia's West Java Province in a compound at Sintanala District Hospital reserved for those with leprosy. Patients face severe ostracisim from family, employers and even religious leaders. There are some 22,000 registered cases of l
(Mark Wilson/IRIN)

In Indonesia, a diagnosis of leprosy can cut patients off from family, employment, public services, even marriage and places of worship, say health officials.

According to a 2011 World Health Organization (WHO) report, Indonesia ranked third globally in 2010 with 19,785 registered leprosy patients, behind Brazil with 29,761 and India with 83,041. By the end of 2011 there were 22,726 recorded cases in Indonesia, with approximately 1,900 under the age of 15.

More than a health risk

Leprosy is caused by a bacillus transmitted by air through droplets from the nose and mouth during frequent contact with untreated persons. Without treatment, the disease can lead to permanent nerve damage and muscle paralysis, according to the WHO.

People with leprosy often face social ostracism, especially when they lose limbs, which can be eaten away by infections that go unnoticed or treated due to lack of sensation in the fingers and toes, and also by facial deformities caused by damaged nerve tissue.

H M Subuh, a senior Health Ministry official for infectious diseases, told IRIN that there is widespread stigma associated with the disease and the people who suffer from it.

"They are rejected by public services, experience difficulties in finding new spouses after divorce from their previous partners due to their diagnosis, and they have also been rejected in religious places.”

According to Intan Setiadi, coordinator of a leprosy patient group in the city of Tangerang in West Java Province, even children are not spared. “If children have been disabled by the disease, if they have lost fingers or toes, then they too can become stigmatized.”

“Leprophobia”

Sitanala Hospital in West Java is one of three state hospitals in Indonesia with a unit specifically for leprosy patients (the others are in the provinces of South Sumatra and South Sulawesi).

The local government covers the cost of care, along with the WHO, which provides medication.

Once patients have been treated for the disease there is no risk of passing it on to others, but some 60 post-treatment patients are still quarantined in West Java’s Sitanala District Hospital.

“Other patients would not want to come to this hospital if they thought that leprosy patients were mixed in with other patients,” said Ruli, a doctor working at the hospital. “Due to the stigma, and to ensure that we can attract other patients, we must have a separate leprosy facility.”

Ruli says that what she calls “leprophobia” is common. “The disease can be considered a curse. People are scared when they hear the name but they don’t really understand the disease.”

“We all have something in common here”

Like many Indonesians, Marcus goes by one name. He used to work for a logging company in Kalimantan, an Indonesian island some 1,000 km northeast of the capital, Jakarta. In the 1980s he contracted leprosy and lost toes and fingers. Eventually he came to Sitanala District for medical help.

“Once my family knew what I had, they were scared of what the rest of the community would think,” said the 72-year-old. “I didn’t want my family to be shunned by the community, so I left and came to a place where I would be more accepted.”

He never returned to work after contracting the disease, opting instead to live in a village in the hospital compound with hundreds of others who have had leprosy. The hospital provides older leprosy patients in the village with free accommodation and three meals daily.

“I have many friends here,” Marcus said. “We all have something in common because we’re all leprosy sufferers.”

His contact with the world is limited to attending the local church. His fellow residents, Enny, 40, and Yuniati, 38, both admitted their embarrassment about venturing outside the compound because they have lost legs to the disease.

Leprosy patients in Indonesia's West Java Province in a compound at Sintanala District Hospital reserved for those with leprosy. Patients face severe ostracisim from family, employers and even religious leaders. There are some 22,000 registered cases of l

Mark Wilson/IRIN
Leprosy patients in Indonesia's West Java Province in a compound at Sintanala District Hospital reserved for those with leprosy. Patients face severe ostracisim from family, employers and even religious leaders. There are some 22,000 registered cases of l...
http://www.irinnews.org/photo/
Thursday, March 22, 2012
Facing the stigma of leprosy
Leprosy patients in Indonesia's West Java Province in a compound at Sintanala District Hospital reserved for those with leprosy. Patients face severe ostracisim from family, employers and even religious leaders. There are some 22,000 registered cases of l...

Photo: Mark Wilson/IRIN
“They are all scared of me, and if I go back to my home in Bandung [capital of West Java], they won’t accept me because they know I’ve had leprosy. I’ve forgotten my address, it’s been that long.”

Sumiyati, 70, a neighbour, says she has had leprosy since 1985. Unlike Marcus, she was diagnosed early and has only a slight deformity to her nose. She has three children and seven grandchildren, but has not seen any member of her family since the week after she was admitted to the hospital in 1985.

“They are all scared of me, and if I go back to my home in Bandung [capital of West Java], they won’t accept me because they know I’ve had leprosy. I’ve forgotten my address, it’s been that long.” Sumiyati has helped at the district hospital since she was cured.

Unable to return home and resume their previous jobs - and lives - some patients garden or clean nearby, while others can be seen begging, selling food or operating rickshaws.

Despite the hospital’s efforts to get patients into the community through paid work, nearby residents keep their distance.

Nurhadi, 43, a local taxi driver, says he never eats from street vendors in the vicinity of the village because he worries that they may have leprosy.

“I feel pity for them because of their suffering,” he says. “But at the same time I prefer to keep my distance from them because I don’t want to catch anything. A lot of people here think that way.”

mw/pt/he


This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions

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