Once, everyone believed that you inherited leprosy, or that it was a curse from the gods. Now we know better – and are edging closer to wiping it out. But more than 500,000 people still develop the disease each year. Róisín Ingle reports from India, where she finds hope amid the suffering.
Chella Kanu sits on her hospital bed in a tiny village in Tamil Nadu, in southernmost India, weaving a shopping basket from bright- yellow and green plastic string. Her eyes are closed as she sings a song she wrote about her life. When she finishes, and the applause from visitors and fellow patients dies down, she smiles, showing pretty dimples in her cheeks. It's only later, when she tells you her story, that the dimples disappear.
It's years since the leprosy bacteria in her system were killed by multidrug therapy, a cure developed at Trinity College in Dublin in the 1970s, but she is still suffering the physically debilitating aftermath, including missing toes and a clawed hand. The psychological effect of the abandonment that followed her diagnosis is harder to measure. To the people in her village and her family, this beautiful young woman will always be a leper.
"To many of us leprosy sounds like an ancient affliction that belongs in the Old Testament, conjuring up images of people in rags carrying bells and banished from society as unclean," says Ken Gibson, director of the Leprosy Mission Ireland. "We think, if we think about it at all, that leprosy is a disease that has gone away." The reality is that, across the Third World, hundreds of thousands of people are still living with the devastating social, economic and physical effects of what is also known as Hansen's disease, after the Norwegian doctor who discovered the bacterium that causes it.
At the Leprosy Mission's hospital in Vadathorasalur, the pharmacist places a slide under the microscope so we can view the innocuous-looking rod-shaped flecks that signify the presence of Mycobacterium leprae, a germ similar to the one that causes tuberculosis. A sign on the wall is just one of many attempts to explode some of the myths that visitors to the hospital can have about the disease. "Leprosy is caused by a germ. It is neither hereditary nor a curse of the gods," it reads. Fewer and fewer people are so deluded in India these days, but it's a point that still needs to be made.
Between 500,000 and 700,000 new cases will be diagnosed this year in parts of Africa, Asia and South America; almost 70 per cent of the world's sufferers are in India. The Leprosy Mission - which was founded in the 19th century by Wellesley Bailey, an Irishman who worked in Punjab - funds several hospitals, community- development projects and low-cost housing schemes, to try to eradicate not only the disease but also the social stigma that is almost as much of a burden to sufferers as the leprosy.
As Dr Robins Theodore, the Vadathorasalur hospital's medical director, gets to work in the busy outpatient clinic, an elderly woman explains that, even though she is worried that she might catch leprosy by coming here, she has travelled 100km to show the doctors a recurring skin complaint. "I know people who came here, and they got good treatment, and they did not get leprosy when they returned," she says. "There are lepers in my village, and I would not go close to them. If they use the water tap I will not use it. I am very afraid."
These days most patients who come to the hospital do not have leprosy. A few years ago locals protested on a dirt track that led to the hospital, demanding that a proper road be built so they could also benefit from Vadathorasalur's medical expertise.
Although much is still unknown about leprosy, researchers have established that improved living conditions, especially better sanitation, have left up to 95 per cent of people immune to M. leprae. "This is a lazy, stupid bacteria that can lie dormant in the body for years, and then, over a period of 15 days, it will manifest," says Dr Robins, sitting at his desk during a break from his rounds. The disease is infectious, but only mildly; it is thought to spread when people cough or sneeze. The first sign of leprosy is a patch on the skin and a loss of feeling as nerves in the fingers and toes are attacked. "These parts are anaesthetised, and the patient can no longer feel anything there," he says. "If we catch them young this can usually be avoided."
But not always. Chella Kanu was just a girl when a routine medical check-up at her school revealed that she had the disease. "I cried, my parents cried, my sisters cried," she remembers. "I was sent to a hostel to start treatment and was able to continue my schooling. When the treatment was over I came back home. At home I was careless. I could not feel in my hand when something was burning, so I got hurt. I didn't take care of my hands or my feet, even though I had been warned," she says.
Leprosy patients are encouraged to wear shoes, but because most people in her community did not she went without. "I did not want to look different, I did not want to draw attention to my leprosy, and so I got ulcers," she says. "I went away to be treated, and it was then that my sisters said they didn't care if I never returned home again."
This sounds unspeakably cruel, but Kanu's family were worried about her sisters' chances of finding husbands if somebody with leprosy was living in the house.
A few years later Kanu was shown how to weave and sew. The bags she could then make earned her an income. Her family tolerated her for a while because of this, but they also treated her poorly. She wanted an escape, and it came when she fell in love with a local who didn't seem to mind that she had the disease. They lived happily together for a few years. "We did not get married, but we gave each other rings and I moved into his house. When I told him I was pregnant he was cruel to me and said that it was not his baby," she says, crying at the memory.
Forced to leave her home and her village, she took refuge in another hospital; she came to Vadathorasalur with the baby after developing more ulcers in her feet. Her baby son, Vidnesh, had diarrhoea and was malnourished; he died shortly after, at a year old. "My family do not come to see me, and they don't like me to visit them," she says.
She has a good life in the hospital, she says, and she still makes money weaving bags. Once her ulcers heal and she has reconstructive surgery on her hand, however, she will have nowhere to go. She is hoping she will be given a job in the vocational training centre in the hospital grounds, where former leprosy patients and children of sufferers are placed. "When I am weaving and singing I forget everything - even the past, even all the pain. I pray every day to God. I tell him I am sorry for everything. I ask him, what did I do that I got this disease? Whatever it was, I am sorry," she says, the tears flowing. "You didn't do anything," I tell her. She says nothing, just cries and squeezes my hand.
IT IS TIME for Dr Robins to do his rounds. The patients lie in their beds, their names and length of time they have spent in the hospital chalked up on boards beside them. Some have been here for more than a month. A man with a grotesquely swollen leg has developed elephantiasis. Some patients have sunken noses, others are missing toes or limbs. One patient had been unable to close his eyes; the other day, a surgeon transferred muscle from his jaw to his eye; now he laughs about the fact that his eyes close when he chews gum. Another patient, who has only two fingers on his right hand, smiles as he is examined by the doctor, who holds up an X-ray that shows the bone damage to his hand. "He came too late for us to do anything," says Dr Robins.
His wife, Rada, the hospital's social worker, takes us to her tiny office, whose walls are covered with information about the 184 former patients still on the hospital's books. "After they leave here we give them loans, which means they can start businesses. They might have a vegetable shop or buy some cattle or make shoes," she says. "When the ex-patients have businesses they get more respect in the community, and it does much to destroy the stigma. Some of ourex-patients are among the most influential in their villages, and they are sometimes sent as spokespeople when there is anything to be negotiated with government. That would have been unthinkable even 10 years ago."
Later that afternoon we drive 40km to a village where Murugan, a former patient and one of eight children, has joined the family ceramics business with help from the hospital. He makes piggy banks and statues of Ganesh, Shiva and other Hindu gods, of the kind you see on stalls all over India.
He first noticed something was wrong while working near the kiln. "I would get sweaty everywhere except my hands and feet, and I didn't notice when I was touching hot things. I didn't feel anything," he says. The seven years after he was diagnosed were "bad, very bad". "I went to Vada, but I did not want to stay there with all these people who had horrible ulcers and hammer toes," he says. "I did not want to end up like them. My family had thrown me out of the home because of the disease, and I wanted to kill myself. I even thought about hanging myself with a rope, but by then my hand was clawed, and I felt so pathetic, because I couldn't even tie a rope to hang myself."
Reconstructive surgery and a small loan have changed his life. "Now I am making money my family don't mind me living here," he says. "I have many friends who have leprosy, but my family are still cautious. An ex-leprosy patient came to the door selling lottery tickets the other day, and my father chased him away." Now all Murugan says he wants is a wife and a family. "Nobody used to come to see me, but I am happy now," he smiles.
Later this year the World Health Organisation is expected to announce that leprosy is no longer a public-health problem, as only one in 10,000 people now develops the disease. Ken Gibson of the Leprosy Mission Ireland is concerned that the declaration may lead to complacency.
"We are committed to seeing the total eradication of leprosy and don't want to stop at the elimination of the disease as a public-health problem," he says. "That is going to take at least another generation. If funding continues, the infection rate will drop, reducing the potential of leprosy to spread. It's a real possibility that leprosy can be rendered a disease of the past, but only if we don't give up. We have to keep working towards that goal."
Chella Kanu sits on her hospital bed in a tiny village in Tamil Nadu, in southernmost India, weaving a shopping basket from bright- yellow and green plastic string. Her eyes are closed as she sings a song she wrote about her life. When she finishes, and the applause from visitors and fellow patients dies down, she smiles, showing pretty dimples in her cheeks. It's only later, when she tells you her story, that the dimples disappear.
It's years since the leprosy bacteria in her system were killed by multidrug therapy, a cure developed at Trinity College in Dublin in the 1970s, but she is still suffering the physically debilitating aftermath, including missing toes and a clawed hand. The psychological effect of the abandonment that followed her diagnosis is harder to measure. To the people in her village and her family, this beautiful young woman will always be a leper.
"To many of us leprosy sounds like an ancient affliction that belongs in the Old Testament, conjuring up images of people in rags carrying bells and banished from society as unclean," says Ken Gibson, director of the Leprosy Mission Ireland. "We think, if we think about it at all, that leprosy is a disease that has gone away." The reality is that, across the Third World, hundreds of thousands of people are still living with the devastating social, economic and physical effects of what is also known as Hansen's disease, after the Norwegian doctor who discovered the bacterium that causes it.
At the Leprosy Mission's hospital in Vadathorasalur, the pharmacist places a slide under the microscope so we can view the innocuous-looking rod-shaped flecks that signify the presence of Mycobacterium leprae, a germ similar to the one that causes tuberculosis. A sign on the wall is just one of many attempts to explode some of the myths that visitors to the hospital can have about the disease. "Leprosy is caused by a germ. It is neither hereditary nor a curse of the gods," it reads. Fewer and fewer people are so deluded in India these days, but it's a point that still needs to be made.
Between 500,000 and 700,000 new cases will be diagnosed this year in parts of Africa, Asia and South America; almost 70 per cent of the world's sufferers are in India. The Leprosy Mission - which was founded in the 19th century by Wellesley Bailey, an Irishman who worked in Punjab - funds several hospitals, community- development projects and low-cost housing schemes, to try to eradicate not only the disease but also the social stigma that is almost as much of a burden to sufferers as the leprosy.
As Dr Robins Theodore, the Vadathorasalur hospital's medical director, gets to work in the busy outpatient clinic, an elderly woman explains that, even though she is worried that she might catch leprosy by coming here, she has travelled 100km to show the doctors a recurring skin complaint. "I know people who came here, and they got good treatment, and they did not get leprosy when they returned," she says. "There are lepers in my village, and I would not go close to them. If they use the water tap I will not use it. I am very afraid."
These days most patients who come to the hospital do not have leprosy. A few years ago locals protested on a dirt track that led to the hospital, demanding that a proper road be built so they could also benefit from Vadathorasalur's medical expertise.
Although much is still unknown about leprosy, researchers have established that improved living conditions, especially better sanitation, have left up to 95 per cent of people immune to M. leprae. "This is a lazy, stupid bacteria that can lie dormant in the body for years, and then, over a period of 15 days, it will manifest," says Dr Robins, sitting at his desk during a break from his rounds. The disease is infectious, but only mildly; it is thought to spread when people cough or sneeze. The first sign of leprosy is a patch on the skin and a loss of feeling as nerves in the fingers and toes are attacked. "These parts are anaesthetised, and the patient can no longer feel anything there," he says. "If we catch them young this can usually be avoided."
But not always. Chella Kanu was just a girl when a routine medical check-up at her school revealed that she had the disease. "I cried, my parents cried, my sisters cried," she remembers. "I was sent to a hostel to start treatment and was able to continue my schooling. When the treatment was over I came back home. At home I was careless. I could not feel in my hand when something was burning, so I got hurt. I didn't take care of my hands or my feet, even though I had been warned," she says.
Leprosy patients are encouraged to wear shoes, but because most people in her community did not she went without. "I did not want to look different, I did not want to draw attention to my leprosy, and so I got ulcers," she says. "I went away to be treated, and it was then that my sisters said they didn't care if I never returned home again."
This sounds unspeakably cruel, but Kanu's family were worried about her sisters' chances of finding husbands if somebody with leprosy was living in the house.
A few years later Kanu was shown how to weave and sew. The bags she could then make earned her an income. Her family tolerated her for a while because of this, but they also treated her poorly. She wanted an escape, and it came when she fell in love with a local who didn't seem to mind that she had the disease. They lived happily together for a few years. "We did not get married, but we gave each other rings and I moved into his house. When I told him I was pregnant he was cruel to me and said that it was not his baby," she says, crying at the memory.
Forced to leave her home and her village, she took refuge in another hospital; she came to Vadathorasalur with the baby after developing more ulcers in her feet. Her baby son, Vidnesh, had diarrhoea and was malnourished; he died shortly after, at a year old. "My family do not come to see me, and they don't like me to visit them," she says.
She has a good life in the hospital, she says, and she still makes money weaving bags. Once her ulcers heal and she has reconstructive surgery on her hand, however, she will have nowhere to go. She is hoping she will be given a job in the vocational training centre in the hospital grounds, where former leprosy patients and children of sufferers are placed. "When I am weaving and singing I forget everything - even the past, even all the pain. I pray every day to God. I tell him I am sorry for everything. I ask him, what did I do that I got this disease? Whatever it was, I am sorry," she says, the tears flowing. "You didn't do anything," I tell her. She says nothing, just cries and squeezes my hand.
IT IS TIME for Dr Robins to do his rounds. The patients lie in their beds, their names and length of time they have spent in the hospital chalked up on boards beside them. Some have been here for more than a month. A man with a grotesquely swollen leg has developed elephantiasis. Some patients have sunken noses, others are missing toes or limbs. One patient had been unable to close his eyes; the other day, a surgeon transferred muscle from his jaw to his eye; now he laughs about the fact that his eyes close when he chews gum. Another patient, who has only two fingers on his right hand, smiles as he is examined by the doctor, who holds up an X-ray that shows the bone damage to his hand. "He came too late for us to do anything," says Dr Robins.
His wife, Rada, the hospital's social worker, takes us to her tiny office, whose walls are covered with information about the 184 former patients still on the hospital's books. "After they leave here we give them loans, which means they can start businesses. They might have a vegetable shop or buy some cattle or make shoes," she says. "When the ex-patients have businesses they get more respect in the community, and it does much to destroy the stigma. Some of our ex-patients are among the most influential in their villages, and they are sometimes sent as spokespeople when there is anything to be negotiated with government. That would have been unthinkable even 10 years ago."
Later that afternoon we drive 40km to a village where Murugan, a former patient and one of eight children, has joined the family ceramics business with help from the hospital. He makes piggy banks and statues of Ganesh, Shiva and other Hindu gods, of the kind you see on stalls all over India.
He first noticed something was wrong while working near the kiln. "I would get sweaty everywhere except my hands and feet, and I didn't notice when I was touching hot things. I didn't feel anything," he says. The seven years after he was diagnosed were "bad, very bad". "I went to Vada, but I did not want to stay there with all these people who had horrible ulcers and hammer toes," he says. "I did not want to end up like them. My family had thrown me out of the home because of the disease, and I wanted to kill myself. I even thought about hanging myself with a rope, but by then my hand was clawed, and I felt so pathetic, because I couldn't even tie a rope to hang myself."
Reconstructive surgery and a small loan have changed his life. "Now I am making money my family don't mind me living here," he says. "I have many friends who have leprosy, but my family are still cautious. An ex-leprosy patient came to the door selling lottery tickets the other day, and my father chased him away." Now all Murugan says he wants is a wife and a family. "Nobody used to come to see me, but I am happy now," he smiles.
Later this year the World Health Organisation is expected to announce that leprosy is no longer a public-health problem, as only one in 10,000 people now develops the disease. Ken Gibson of the Leprosy Mission Ireland is concerned that the declaration may lead to complacency.
"We are committed to seeing the total eradication of leprosy and don't want to stop at the elimination of the disease as a public-health problem," he says. "That is going to take at least another generation. If funding continues, the infection rate will drop, reducing the potential of leprosy to spread. It's a real possibility that leprosy can be rendered a disease of the past, but only if we don't give up. We have to keep working towards that goal."
The Leprosy Mission Ireland is hosting a dinner at the Four Seasons Hotel in Dublin on June 2nd, with special guests Craig Doyle and Brian Kennedy, to raise money for Vadathorasalur hospital and other projects. Tickets cost €125. See www.leprosymission.info