Leprosy – A 21st century encounter

We think of leprosy as an extinct biblical disease, it’s not.

Photo credit: historyfish.net

Photo credit: historyfish.net

I knew about lepers. I’d seen them no longer infectious, but with missing fingers and limbs, begging around the central market. I’d even had a close encounter. Staring down at the sidewalk waiting for Heart Guy to hail a taxi, a pair of strangely fore-shortened feet in sandals had suddenly come into view not more than half a foot away from my pink and white toes in their new flip-flops. I couldn’t see the state of the toes before me. They were covered in blood encrusted socks.  But the clawed hand reaching beneath my nose, a few digits missing, was too uncomfortably visible, too close…

I dug in my pocket for the spare change I keep ready for times like this, and dropped it into the waiting hand. Then I ducked into the taxi that had fortuitously arrived.

I knew about the leprosy communities in the countryside, where persons like the leper I encountered could be supported in caring communities with access to ready medical attention. For years, we’ve been helping our friend Professor Wayne’s wonderful work for these communities. Still I had never asked to visit. Call it cowardice, squeamishness, prejudice, a selfish heart…

Last week though, I packed my fears away and went.

Here’s a note about the visit. There are no pictures. And I’ve not mentioned where these communities are.   I did not wish to bring the villages into disrepute or to dishonor the people we visited. Neither did I want to shock and distress you.  In this instance, I believe, the words should be enough.

It does not kill, neither does it seem to end.  If not treated, it lingers, causing tissues to degenerate, bodies to deform, to weep.

The leprosy bacterium causes nodules to form in the peripheral nervous system and mucosa of the upper respiratory tract. These spread to the hands and feet. Secondary infections cause cartilage to be absorbed back into the body, and lead to disfigurement of the skin and bones, twisting of the limbs and curling of the fingers to form characteristic claw hands. Facial changes include thickening of the outer ear and collapsing of the nose.  The optic nerves deteriorate. As nerves are damaged, there is a loss of the pain sensation.

Although the infection can be treated, the nerves never recover. Without the gift of pain, survivors of leprosy can’t know when they’ve damaged their skin or hurt themselves until their wounds begin to fester. By then, it’s often too late and the infected digits or limbs may need to be amputated.

Yes, in the 21st century, there are medicines to cure leprosy. But there is no way to unclaw the fingers, to give back feeling to the toes, to allow the dead nerves to once more feel pain.

A monthly multi-drug cocktail can render a leprosy patient non-infectious after two weeks. With medication, lepers can be cured after six months. The World Health Organization (WHO) has been providing the drug cocktail free to all patients worldwide since 1995, and the disease is now no longer a threat to community health. According to official reports received by the World Health Organization from 105 countries and territories, the number of people registered for ongoing leprosy treatment in 2012 was about 182,000 down from 219,000 in 2011. In the communities we visited, new cases were few and far between. Nowadays, the priority has shifted from control to detection and care, and now to re-integration.

Still, the scars remain.

In most countries, leprosy survivors are discriminated against. Without proper care, there’s good reason. Undressed festering wounds stink.  The clawed digits and shrunken toes are terrible to look at, almost non-human. And then there’s the fear of contagion. A survey of attitudes in one country shows that most people are aware that leprosy cannot be contacted through superficial social interaction and that the disease is curable. But, there’s still significant prejudice against marrying leprosy survivors or employing them. A leprosy survivor, especially an older one with significant deformities, has very little chance of being a full member of society.

It’s an old medicine that makes the scars bearable – love

At the communities we visited, established by missionaries many years ago and now supervised by the government, the leprosy survivors had made a home. Among hectares of fields, they’d built basic homes, married and established families. Living off the produce from their backyards and government supplements, they lead simple lives. They seemed, for the most part, happy, if isolated.

We visited with a couple in their seventies, who had met and married in the camp more than thirty-five years ago.  The husband, both lower legs gone, was ill that day. His stumps were weeping and he had a temperature. His wife seemed a little worried. Both however, welcomed us into their one-roomed house with smiles. They had a wheelchair and an old hand-controlled cart for transportation.

“For around here,” the wife said. “We don’t go out.”

“We’re ashamed,” a sixty year old woman, who lived in a house with seven other single women told me. She had an unblemished cheerful face.  I had to look hard to see that there were scars on her feet and ankles, that the finger of one hand was shrunken. She was healed of the disease. In her mind though, she was still someone set apart, someone to be scorned. “It’s good here,” she reiterated, indicating the old house that she lived in, the metal beds, her overgrown garden.

It’s the children and grandchildren of these leprosy survivors who’ve ventured out and are still venturing out.

We met thirty- and forty-year old nurses and doctors who’d been born in the communities, gone out to make their way in the world, and then returned. They came home, in part, because they wanted to help. How much was due to discrimination in the outside world, they did not say.

We met sixteen, seventeen and eighteen year olds eager to face the world. There was a girl who wanted to study medicine, a boy who looked forward to teaching English, another who would be studying to be a mechanic. They did not seem to fear the world. They did not talk about shame, only about their dreams and the future.

But even amidst the positive developments, there are new challenges.

The leprosy communities we visited need hope. Their children need to be brave. The thrust of public policy now is re-integration.

There’s merit to the idea leprosy survivors and their families should be part of society, that they should be freed from isolation and dependency. But, my cynical self does wonder if it’s really just good health policy or if it’s the hectares of valuable land these communities sit on, hectares that can be re-developed as factories or condominiums or tourist resorts. As for my do-gooder self, well… I worry how that old couple and elderly woman will fare in a village, without a kitchen garden and without subsidies. Lowly educated, without the sound hands and feet needed to be employable, how will they feed themselves? And without the community doctors and nurses, who will clean and dress their wounds when infections set in?

“We trust in God,” a nun who works at one of the communities tells me, the most beatific expression on her face.  “We pray.”

So should all of us, I guess.

And, if you are moved to help with any of these communities, do drop me an email at oddznns@gmail.com and I’ll be happy to direct you to their websites and to Professor Wayne’s non-profit.

Comments
6 Responses to “Leprosy – A 21st century encounter”
  1. Audrey I can’t imagine how heartbreaking it would be to see these people and feel their pain of rejection. Thank you for sharing this I had no idea Leprosy was still a problem.

    • Audrey Chin says:

      Kath, The good news is that it’s becoming less of a problem. Multi-drug therapy inactivates the bacteria fast and new infections are falling. Now, we just have to deal with the stigma.

  2. It took courage for you to go there. Most people would rather look away. An incredible story of the power of love and kindness.

  3. Audrey Chin says:

    Kathleen, the nuns who started these colonies and continue to manage them are incredible women! You should have seen the floors at the hospital, clean enough to eat off. And the footbaths were sparkling. You could see the love and care.

  4. Jay Warner says:

    you bring this problem to light in a thoughtful, caring way. Yet, you don’t shrink from the realities of this harsh existence. Discrimination and exclusion touches their lives in ways we hope to never have to experience. Another reason to fight for human rights and see past the disease or superficial conditions to the heart within.

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