Out of Sight - Yet Here to Stay...
“Command the children of Israel, that they put out of the camp every leper, and everyone that hath an issue, and whosoever is defiled by the dead;” Numbers 5:1-3
Is it any wonder leprosy became the biblical plague, one that brought with it shame, rejection, and unshakable stigma? The leprosy that is referred to in several chapters of the bible and other religious and historical texts was a loosely used term for a variety of skin conditions, from rashes to patchy skin or to swelling. The one thing they had in common is that they were held to be highly contagious. In the modern world, leprosy is known to be different to that.
It has even had a name change, to Hansen’s Disease, after the Norwegian scientist Gerhard Henrik Armauer Hansen. He discovered in 1873 that Mycobacterium Leprae, a slow-growing bacterium, caused the infection. As a bacterium, it isn’t terribly efficient – it’s hard to become infected, because the human immune system in 95 percent of adults can fight it off. The symptoms can be delayed for years, making early detection hard.
The disease is mostly painless, but the bacterium can attack the nerves in arms, legs, and feet, and make it impossible to feel cuts or burn or other injuries. Blindness is another common side effect, as is discolouration of skin, muscle weakness that leads to claw-like fingers and shuffling feet – all the signs of a leprosy sufferer repeated through the ages and amplified in superstition.
For a long time, if patients were treated at all and not simply cast our or shut away in a leprosarium, treatment usually consisted of administering chaulmoogra oil. The substance came from the nut of a tree native to India, which is still one of the worst affected countries in the world, despite the availability of a cure since the 1940s. It was given orally, injected or put in an ointment, and it had practically no effect. A case like that of the cured leper called Jimmy Kokupe in “Walking in the Shadow” who was declared free of the disease after only a year of isolation in a leprosy colony in New Zealand, was a miracle. But even modern cures cannot undo the damages Hansen’s Disease has inflicted upon the body.
Leprosy should be eradicable, but since it spreads mostly among the poor who live in crowded conditions, it likely goes undetected until the sufferers can’t hide the symptoms any longer. Added to the fear of losing their work if they have it, comes the shame. Leprosy sufferers still battle the stigma dating from biblical times, in which they often believe themselves.
Isolation, though not a medical necessity because patients stop being contagious within a few days of starting their long-term treatment with antibiotics, is in many cases still an accepted reality.
The most famous leprosy colony in Europe was Spinalonga, a small Greek island officially belonging to Crete. It served from 1903 to 1957 as an active leprosy colony. Today, leprosy is deemed eradicated in Europe, but it’s very much alive in the Pacific region, in India, Brazil and Indonesia. The World Health Organization registered 208,619 new cases globally in 2018 alone. The United States is one of the few First World countries where leprosy still occurs in 150 to 250 cases per year – one of them featured in an episode of the hit TV series “House M.D.” (“Cursed”, episode 13, season 1). Here, the patient is cured with thalidomide, which in leprosy cases used to be prescribed mainly for the treatment of skin nodules. Due to its toxicity and severe side effects, especially in pregnancy, the WHO does not recommend that treatment. The standard cure for Hansen’s Disease is a multi-drug therapy consisting of dapsone, rifampicin and clofazimine. What is still underdeveloped, is education and the coordination with government and communities to give leprosy sufferers access to all the help they need.
Several private foundations are also working towards that goal. The Pacific Leprosy Foundation in Christchurch, close to the former leprosy camp on Quail Island, focusses its charitable work on leprosy sufferers and their families in the South Pacific and in New Zealand. Because the disease can go unrecognised for so many years, people can unwittingly move to a country like New Zealand, carrying the infection in their bodies. About four suspected or confirmed cases annually have been registered in the small country in the Southern Hemisphere in the last decade. But, once treated, they can live a normal life. There is no need for them to be cast out. Contrary to what the bible says, they are not unclean. Only unlucky.
Find out more about the work of the Pacific Leprosy Foundation or how to support them here.