An Irish-born charity is working to eradicate leprosy in the developing world. Claire O'Connellreports.
LEPROSY. THE word immediately conjures up images of disfigurement, stigma and isolation, even though the disease has effectively been gone from Ireland for centuries. But for millions in the developing world, leprosy continues to cause physical harm, fear and social exclusion.
Yet it needn't be so, according to Ken Gibson, chief executive officer of The Leprosy Mission (TLM), a Christian charity set up in Ireland nearly 135 years ago which now aims to completely eradicate leprosy through cure, education and eventually vaccination.
Next month TLM will host an event in Dublin to celebrate the centenary of Irish scientist Vincent Barry, who helped devise a cure for leprosy, and to highlight its current projects to combat the disease.
Most countries have now eliminated leprosy, but pockets of the bacterial infection remain around the world, explains Gibson. "You still find it in the poorest communities because you have poor nutrition, poor sanitation and overcrowded conditions," he says.
Every year about 250,000 people are diagnosed with leprosy, according to World Health Organisation (WHO) figures. It usually starts as a patch on the skin and damages nerves, and this loss of sensation can eventually lead to the much feared damage to body parts, explains Gibson.
"People think leprosy makes your fingers and toes fall off but it's because of other infections or accidental damage or amputation," he says. "I met a guy in India who carried a teapot to the other side of the room and he destroyed his hands. I met a woman in China who had no feeling in her hands and amputated a finger while she was peeling vegetables for dinner. She didn't feel it. And I met a man in China who was digging in a field and removed his foot and he didn't know, he kept going."
Leprosy can also affect bones and cartilage, causing deformities that are instantly noticeable, and the disease has huge social implications for the person. "Leprosy still carries a huge stigma," says Gibson. "We meet people who are thrown out of home because they have leprosy, or the husband has packed up and left with the kids, or people have been beaten and left to die."
It means people with the disease can often hold back from seeking treatment until they have already suffered disability. "Leprosy is completely curable if it's caught in time but people are reluctant to
come forward for diagnosis," says Gibson. "We need health education in the developing world to say it is not to be feared and those who have had the medication should be able to go back and live in their
communities.
"And because it's curable in the early stages to come forward and avoid the disability and stigma."
TLM, which receives funding from Irish Aid and corporate and private donations, currently provides treatment, rehabilitation and education in the developing world to help rebuild communities and improve overall healthcare standards.
But leprosy will not be completely eradicated without a vaccine, according to Gibson, who describes how TLM backs research to that end. The problem is that so far the only compound that can effectively vaccinate against the infection is thalidomide, a drug known to cause birth defects, he explains.
"We wouldn't dream of vaccinating women under a certain age and unless you can vaccinate the whole population there's no point. So we need to find an alternative," he says. The alternative will probably involve rapidly diagnosing and curing the patient of the disease and treating others in the community with a specially designed serum to stop the infection spreading, says Gibson.
"If we kill the infection and prevent it recurring, the more we do that then we are getting an exponential hit on this that has not been seen until now," he says. "We would expect the follow- through from that to
be a rapid decline in the incidence of leprosy and a total eradication in our lifetime. That's the theory. It depends on us coming up with the serum."
Meanwhile, TLM is starting to tackle other "neglected" diseases of poverty too, such as parasitic infections that can cause malnutrition, disfiguration and blindness, and which threaten up to half of the
world's population, says Gibson.
A pilot programme will target the diseases in Côte d'Ivoire, where TLM has already improved maternity services to help boost general health. "You can't treat leprosy in isolation,'' he says. "And we have a realistic possibility of eradicating diseases that threaten 3 billion people. The potential is enormous."
Irish chemist honoured for his part in leprosy cure
Like most countries around the world, Ireland has a long history of leprosy. St Stephen's Green in Dublin was once a leprosy colony, and occasional "leper squints" remain in churches - holes in the wall where lepers who had been ostracised from society could peer in at ceremonies.
While leprosy has been eliminated here, Ireland has left a lasting mark on the fight against the disease because an Irish chemist discovered part of the cure. It was while working on tuberculosis in the 1950s
Vincent C. Barry and his team at Trinity College Dublin synthesised a compound called B663 (clofazimine) that proved effective against the bacterium that causes leprosy.
His research paved the way for the multi-drug antibiotic therapy that the World Health Organisation (WHO) currently provides free to patients in regions of the world where leprosy is still endemic.
Dr Vincent Barry's discovery will be recognised in his centenary year at an event at the Royal Irish Academy in Dublin on December 9th.