A new name and a fresh determination
By Ken Gibson
(From the January - March 2018 issue of VOX)
Just like the rest of us, Ram Subedi enjoys his cuppa! But danger and disaster lurk in the everyday task of making his tea. Ram has leprosy. His hands have been robbed of feeling.
That’s what leprosy does: it kills the nerve endings. It causes loss of sensation and pain.
Can you imagine it? Can you feel the horror? On one occasion, Ram grasped the teapot. He didn’t feel the heat. He held on tightly when you or I would have let go. He didn’t feel it but he wasn’t immune to its effects. Ram’s hands were severely ulcerated. He could so easily have lost his hands. Thankfully he received treatment at a Leprosy Mission hospital before that happened. Thousands of others are not so fortunate.
Leprosy was driven from Ireland many years ago. Many believe it is a disease of Bible lands and Bible times, confined to the pages of history. Yet, every hour of every day more than 30 men, women and children are diagnosed with leprosy… arguably the cruellest and certainly the world’s oldest communicable disease!
Where leprosy causes loss of feeling, it exposes the body to horriﬁc injury. But leprosy is curable. Injury and disability are preventable: if leprosy is caught in time, hands, ﬁngers and limbs can be saved from amputation and destruction. Leprosy affects the whole person, physically, mentally, socially, economically and spiritually. Every year, thousands upon thousands of sufferers are driven away from family, friends and society.
The Leprosy Mission Ireland has a new name: The Mission To End Leprosy. The name change is significant, flagging up the mission’s intent to see leprosy finally consigned to the pages of history. Clofazimine, the main drug in the concoction of antibiotics for leprosy was discovered by a team of researchers at the Medical Research Council in Trinity College Dublin. Since its roll out in the 1980s it has been used to treat and cure more than 15 million people. Back then the World Health Organisation believed that the steady roll out of this drug would see leprosy fizzle out. That hasn’t happened.
There are a number of reasons why leprosy has not yet been defeated. First, because leprosy is a stigmatising disease, many people don’t come forward for treatment. Fearful that they will be shunned by family, neighbours and employers, they try to hide their illness for as long as possible. But, leprosy is a progressive disease slowly damaging the hands, feet, eyes, face and nose. If it’s caught early, the damage can be arrested.
WHO statistics for the past decade show that an increasing proportion of new cases are diagnosed when the person presents with disability. That suggests that the illness is not being detected early enough. One of the core strategic objectives of The Mission To End Leprosy is to support programmes to detect leprosy earlier. This vital work prevents leprosy sufferers being condemned to lives of needless disability.
Conservative estimates suggest that in the past decade some 4 million people may have contracted leprosy but remain undetected. Closely allied to early detection, the Mission is leading the global campaign to identify all of these undetected cases. Of course, undetected and untreated cases of leprosy mean that the infection spreads further. Recent investigations by the Mission and its partners identified up to three times more new cases than had been anticipated in some areas of India.
When Wellesley Bailey, a young man from the Church of Ireland, started the work of the organisation in 1874, there was no cure for leprosy. All that could be offered was compassionate care. When Wellesley first met leprosy patients in India, he wrote home to his fiancée, Alice, with these words “Their first and greatest need is the gospel but in bringing them the gospel there is so much more that needs to be done…” He went on to list all the practical steps that needed to be taken, clean water, sanitation, safe housing and compassionate care. That remains the heart of the Mission’s work.
From humble beginnings in Dublin in 1874, Wellesley could not have anticipated that this organisation would, today, be leading the global campaign to finally interrupt the transmission of leprosy. Last year, the Mission launched a major scientific research initiative called R2STOP, research to stop the transmission of leprosy. Funding €1 million of scientific research for the next 10 years, the Mission believes that it will find the way to stop leprosy spreading.
Despite being the oldest known disease in human history, the stigma and secrecy that surrounds the illness means that there are many things that remain unknown about how it spreads. It’s generally believed that it spreads by coughing, sneezing and living in poor conditions that compromise immunity. But the Mission’s work in recent years has identified that the bacteria can remain viable in the soil or even in water. No disease can be defeated unless it is known how it spreads. The Mission’s research is vital to ensure final eradication.
The Mission To End Leprosy is a new name. It’s involved in exciting new global strategic initiatives, but this is still a Christian Mission, bringing Christian compassion and care to men, women and children affected by this ancient disease. It’s mission statement remains, “To minister in the name of Jesus Christ to the physical, mental, social and economic needs of individuals and communities affected by leprosy, working with them to uphold human dignity and to eradicate leprosy.” It’s an exciting privilege to be part of eradicating the oldest known disease in human history but, as the team at the Mission says, “It is the people we serve that matter.” People like Ram.
Of course, that work can only happen with the partnership of people and churches across Ireland who generously support the work through donations and legacies. A number of years ago a wise supporter left a legacy to the Mission in Dublin. The condition was that it was to be invested and the income derived used to pay for all of the office’s administration costs. That’s such an enormous help, ensuring that every cent donated to the Mission in Dublin is used directly for the programmes. The work, established in humble beginnings in Dublin in 1874, continues to receive God’s blessing.