Fighting an ancient disease in a modern world

Ken Gibson tells Colm Fitzpatrick about the myths surrounding leprosy

An Irish-born charity is working globally to try and make one of the world’s oldest diseases a thing of the past.

Leprosy, also known as Hansen’s disease, often evokes imagery of contamination and bodily disfigurement but the reality of the ailment is very different to what most people think.

According to Ken Gibson, Chief Executive of The Mission to End Leprosy, a charity focusing on eradicating leprosy worldwide, there are many myths surrounding leprosy, with Ireland being particularly prone to accepting this misinformation.

“Sadly, if you ask people in Ireland about leprosy, they’ll see it as a disease from biblical times,” he said, adding that because it’s not on our doorstep, most people don’t think it exists anymore.

In fact, leprosy affects more than 250,000 people a year, with over 2-3 million living with Hansen’s disease-related disabilities globally, although the actual figures are much higher. It has a particularly acute effect on those living in India, Brazil and Indonesia but is also present in Western countries such as the US.

Leprosy is referred to as Hansen’s disease, named after the Norwegian physician, Gerhard Henrik Armauer Hansen, who debunked the prevailing theory that leprosy was a hereditary disease, proving instead that it actually had a bacterial cause.

Commemoration

Sunday next week – January 28 – is the 61st World Leprosy Day, annually observed around the world on the last Sunday of January. The day was chosen in commemoration of Mahatma Ghandi who worked on integrating those with the disease back into society. It was initiated in 1954 by Raoul Follereau, a French philanthropist and writer, as a way to raise global awareness of this deadly ancient disease and call attention to the fact that it can be prevented, treated and cured.

On the day, organisations hold rallies and marathons to try and raise money for prevention and rehabilitation, with opportunities for the public to learn more about the symptoms.

For Ken, it is also an opportunity for myths to be dispelled, and for people to become more educated about its pervasive effects.

“It’s the oldest known communicable disease in history, firstly appearing in China,” he explained. “As a result, nobody had any medical knowledge about it – and so you began to separate people. That’s where the greatest myth comes from, that people need to separate. That’s the hardest challenge we have in the world today.”

Despite popular belief, leprosy is extremely hard to catch with around 95% of adults immune to it. Even those who contract it can live a normal life surrounded by friends and family if treated with antibiotics.

Ken also explained that the disease does not make your limbs fall off, but this is actually a result of the numbness of nerves. The disease affects the nervous system and with no sensation, you’re more prone to injury, which may create an infection and subsequently require amputation. “I know a man in China who had no sensation in his feet, and while digging in the field he accidentally removed his foot. Eventually all of the bacteria got into his leg,” said Ken.

Experience

Previously called The Leprosy Mission (TLM), which has over 140 year’s experience in fighting leprosy, the charity was given its new name to highlight the purpose of its role. It has six key areas of focus such as the breaking of transmission by investing heavily in scientific research, or building inclusive communities in order to build an understanding of acceptance and making sure affected people have the skills needed to participate fully in society.

“We aren’t just running hospitals, we’re doing a whole heap more,” said Ken. “We’re investing in cures and developing a political will internationally to put leprosy on the agenda.”

Although there are many times of difficulty in trying to ameliorate the leprosy crisis, Ken remains continually encouraged by his self-sacrificial team who are always there to help.

“The level of commitment from the staff on the ground from the front lines is incredible,” he said, adding that some of the best surgeons and medics in the world who could earn a fortune elsewhere are choosing to treat the poor and marginalised instead.

He is also routinely inspired by those suffering from the disease, who in the face of their ordeals are still able to thrive personally and socially.

“Some sufferers have nothing in life, yet they’ve found and inner contentment because an organisation has come to them.”

Helping those with leprosy also has a spiritual dimension according to Ken, who pointed out that because the disease is associated with the healing miracles of Jesus, its eradication resonates with many Christians.

“For anybody with Faith, there’s a real alliance to Christ. This is what Christ did,” he explained, and so it is both and ecumenical and interdenominational mission.

Although Christians have an acute affiliation with leprosy, it still remains a problem with which everyone should be concerned.

“In Ireland, we need to become aware that it’s a problem, to become aware of it effects,” said Ken, adding that we are called to personally respond to this crisis and extend our hand of compassion.

For more information about World Leprosy Day and combating the disease, see: https://www.tmtel.org/