Isam Bala contracted leprosy, also called Hansen’s disease, more than 40 years ago when he was just twelve. Isam and his wife, Na Law, were forced to leave their village on the China-Myanmar border when they were still teenagers. The couple spent the better part of four decades wandering from town to town, ostracized and unable to build a permanent life anywhere. It wasn’t until Isam was in his sixties that he discovered he could get free treatment at Naung Kan, a leprosy colony run by the Kengtung Catholic Diocese, about five miles from the city of Kengtung, in Myanmar.
From the Chinese border it took Isam and Na five days of walking and hitching rides to reach the colony. By then his condition had become severe. His spine was crooked and fingers were meshed together. His wife, who never developed leprosy, was nearly blind. At the clinic in Nuang Kan, he received multi-drug therapy and his leprosy was cured.
Many of the multi-ethnic residents at Nuang Kan share similar stories. They have wandered the countryside on their own — some for decades — until arriving at this colony run by Catholic nuns.
About 3,000 leprosy cases are reported in Myanmar every year. Many of those inflicted with the disease still suffer for years, without knowledge that treatment is available. Myanmar, which only recently emerged from decades of self-imposed isolation under the guise of various military regimes, has one of the world’s worst healthcare systems, limiting its capacity to provide adequate detection and diagnosis in the more remote and often conflict-affected regions.
If left untreated leprosy causes extreme disfiguring to the nerves and skin. It’s one of the world’s oldest and most feared diseases. Sadly, it’s also one of the most misunderstood. Many still think it’s highly infectious, while in truth it’s now estimated that more than 95 percent of the world’s population are immune to mycobacterium leprae, the bacterium that causes leprosy.
Shortly after the Second World War, Father Cesare Columbo took over the Naung Kan from the American Baptist Mission. He wanted to make a place where those afflicted by leprosy could live out productive lives alongside their families, a radical concept for its time. In the mid-1960s, several years after the dictatorship took control of the country, Father Columbo and the Italian sisters who cared for residents at the colony were deported. But local Catholic sisters took their place to continue caring for the residents.
Today there are 55 former leprosy patients here; all of them have been cured thanks to multi-drug therapy. Yet they continue to live at Naung Kan with their family members, approximately 300 people in all. Most of the residents at Naung Kan have lived at the colony with their families for several decades, some even longer. They come from different ethnic minorities with distinct cultures and languages, but they are all now part of an intact community, after being ostracized from their own communities so many years ago.
Photographs of people with a disease like leprosy often evoke pity — but it is clear these people aren’t helpless victims: they are survivors. Despite their conditions, they are still fiercely independent and retain their pride. Everyone fends for themselves as much as they can manage. Most cook their own meals, shower by themselves and keep their private spaces clean. Some rise each day to work in the colony’s gardens.
They may have lost their place in the world after contracting leprosy, but at Naung Kan, they have found a new place to call home.
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Brennan O’Connor is a freelance photographer based in Southeast Asia, currently working on a photo book on Burma’s border areas. The project has taken him around the region to photograph the numerous rebels, refugees and migrants residing on both sides of the Dividing Lines.