Still a common disease in parts of the developing world, leprosy has long been viewed as a scourge in Vietnam, even as medical treatment has reduced its impact. By Chris Mueller. Photos by Fred Wissink.
Sitting cross-legged on a small hospital bed, Nguyen Van Muoi quickly comes to life. He waves his thin, wrinkly arms with faded words tattooed on them — and what are left of his hands — energetically in the air as he answers questions. He tells the story of how he ended up at the Ben San Leprosy Hospital like a Quentin Tarantino movie: opening somewhere in the middle, then jumping to the end before starting over from the beginning.
Muoi, 75, was first diagnosed with leprosy, the disease that took his hands and feet and ravaged other parts of his body, after he was wounded in 1970 while sloshing through the rice fields of southern Vietnam, where he fought the US and South Vietnamese armies. A bomb exploded, sending shrapnel into his belly, and eventually sending him to a field hospital where a doctor told him what he already knew — he had leprosy.
Muoi knew the diagnosis meant he could never live in a normal community, and when the war ended, he took to begging on the streets of Ho Chi Minh City. In 1996, he was arrested for begging and first arrived at Ben San, about 40 kilmotres from the city, in chains. By that time his leprosy had progressed so far that the police wouldn’t put him in a normal prison for fear of causing an outbreak. Instead they locked him up in a small leper prison at Ben San. The prison closed about 10 years ago.
After being released, Muoi made his way to a small village outside of Bien Hoa north of Ho Chi Minh City, where he still scratches by as a beggar today. All 100 people in his village are beggars and former leprosy patients, treated and no longer contagious. But the disease has already taken its toll, leaving their bodies so warped that they are still shunned from society. Hundreds of villages like Muoi’s can be found throughout Vietnam, many concentrated in poor areas of the Central Highlands, and treatment centres like Ben San are too full to allow more patients to stay permanently.
Leprosy, also called Hansen’s Disease, is an ancient ailment that has been documented for nearly 2,700 years. For centuries it was thought of as a scourge sent by some supernatural power to punish its victims. Lepers were historically ostracised and forced to live at the fringes of society, and for many in Vietnam that way of thinking has changed little.
But the treatment and understanding of the disease has come a long way since then. It’s now known that leprosy is caused by bacteria that do nerve damage leading to paralysis, typically in the hands, feet, eyes and face. While the exact mode of transmission still eludes scientists, today the disease is not very contagious, with about 90 to 95 percent of the population naturally immune to it.
Treatment has become much easier as well. Once diagnosed, patients undergo a multidrug regimen for 6 months to a year, which usally cures them. Amputations are now rare. After two weeks of treatment most patients are no longer contagious. The drugs involved are also widely available, and in Vietnam a western pharmaceutical company provides them free to hospitals.
At the Ben San Leprosy Hospital all of the patients are treated, cured or no longer contagious. The government-funded hospital is impressive, especially by Vietnamese standards. Its green and breezy grounds are spread out over 90 hectares, and 700 people live there permanently while hundreds of others come for treatment. Behind its walls, a dirt road flanked by tall trees leads to a central treatment area. Multiple wards filled with leprosy patients make up the majority of the cluster of buildings. Dirt paths surrounded by flowers and lush vegetation link the wards with houses scattered around the edges of the grounds. Here families tend gardens and raise livestock. The whole place is kept tidy by nuns who also live on the compound.
This isn’t a leper colony, but a hospital with trained doctors. Leprosy has decreased so dramatically in Vietnam that most of the patients at Ben San are elderly, and treated for problems more associated with aging than leprosy.
Since 1985, the number of cases worldwide has dropped significantly as well, from about 5.2 million to around 200,000 by the end of 2011, according to the World Health Organisation. And in Vietnam there are only about 350 new documented cases a year, compared to 126,000 in India — one of the worst countries for leprosy — and around 100 in the United States.
Although new cases have gone down drastically, Dr Vo Duc Huy, the head medical doctor at the hospital, says one of the biggest challenges is finding space for new patients to live on site.
When the hospital first opened its doors in 1959, leprosy was endemic. At the time, the prevalence rate in the Central Highlands was one of the highest in the world, according to WHO, and whole families were ostracised. Many of them made their way to Ben San.
Today, of the 700 people living at Ben San, 250 are family members of patients. Of those 250, half no longer have leprosy patients in their families, but they stay at the compound even after their relatives pass away.
“This is one of the biggest problems here,” says Huy, who has worked at Ben San for 14 years. “They first came here a long time ago but there is still such a stigma and now they can’t go back into the community.”
Despite the triumph of modern medicine, leprosy is still widely feared and misunderstood in Vietnam.
Ngo Truc Hieu was born at Ben San two years after his leprosy-infected parents moved there in 1976. He grew up on the compound, attending school in the nearby town. It was at school, he says, that he first realised how the rest of Vietnam viewed leprosy. Despite not being infected, Hieu became an outcast, untouchable by association. Even the school principal made him bring his own water from home and wouldn’t allow him to play with the other children.
Hieu still lives at Ben San with his wife, who works at the hospital as a nurse. He says people are more understanding of the disease these days, but many are still afraid of it.
While the hospital has plans to reintegrate former leprosy patients and, more importantly, those who have never suffered from the disease, it is too late for many. They have spent the majority of their lives at Ben San and think of it as their home. For those born on the grounds, the outside world is a frightening thought, and living among the outcasts is the only life they know.