Hands up who’s heard of leprosy?

As much as I am loving working for MSF and am aware of the difference that our presence makes in the lives of people here I just want to write a short post about a woman whom I encountered briefly a while back whom we couldn’t help much – at least not more than we already had. I couldn’t give her much in the way of the medical care that she needed – but I want to give her a voice, and tell the tiny part of her story that I witnessed.

Hands up who’s heard of leprosy?

That’s most of you I’ll bet. And I’ll bet that along with the word come dreaded images of deformed people in the streets of some biblical town clad in rags, shouting “unclean, unclean” as they go. Leprosy is a disease that in the minds of most people belongs in the dark ages – it’s ancient history and as far off as the days of thumb screws and when people still thought the earth was flat.

So here’s what I know about leprosy. A slow growing bacteria it is related to TB – which makes it thankfully fairly hard to catch but harder to treat. It attacks selected peripheral nerves causing them to swell within their sheaths and stop functioning – meaning that you lose some movement but crucially and most devastatingly all sensation in the areas supplied by those nerves. Hands, feet, face… This doesn’t sound particularly catastrophic at first, but we rely on these nerves for warnings of minute injuries – splinters, blisters, burns – all of which then serve to make us conscious of the tissue damage so we can treat it and allow it to heal. You stop and pick out the splinter. You change your shoes for a pair that doesn’t rub. You swear and drop the hot teapot and run cold water over your scald. Except when you have leprosy you don’t feel anything so you don’t do any of these things. The splinter festers into a sore. The blister becomes a deep ulcer. The 1st degree burn becomes a 3rd degree burn and all without you wincing or even noticing. And then infection sets in and so on and so forth in a cycle of skin, muscle, bone and eventually limb damage.

The treatment is a fairly tedious process of combination antibiotics taken daily for six months to eliminate the bacteria that caused the nerve damage in the first place. But as the late great Christopher Reeve could attest too nothing can repair a nerve that is already damaged. The disease is technically cured but nothing can restore the sensation that has been lost and end the ongoing cycle of damage and tissue loss and gradual limb erosion.

So there’s the biology bit. And here’s the person part.

It was an averagely hectic day at the hospital and I was walking past the thankfully quiet emergency department (ED) when a folded up figure on the ground outside caught my eye. The older people of this community still aren’t exactly au fait with the concept of chairs so it’s not uncommon to find them squatting on the ground next to a completely deserted bench. The ED staff however, are VERY au fait with the concept of chairs and the nurse required rousing out of his comfy plastic lawn seat inside to help translate for me. After spending six months here leprosy is easy to spot – irregularly eroded stumps where fingers used to be, a curious and distinctive pronunciation of facial features and milky scarred eyes (did I mention that you don’t feel pain and irritation from your eyes either? So you don’t make tears, or blink enough and gradually the cumulative damage turns you blind)

As the nurse starts asking the old woman what’s brought her to MSF today, I crouch down and take her leathery wrist in my hand checking for temperature and assessing her radial pulse. A few seconds assessment later it’s all seeming normal and non-urgent except now the nurse is bent down and bellowing a stream of high decibel Nuer out mere inches from this woman’s face and my own.

Ah. That answers my next question already.

One of the less pleasing side effects of the six month course of antibiotics is that they can affect your hearing. Up to the point of total loss. The translation relayed confirms what I have already worked out – the leprosy treatment was completed from MSF some four years ago.

So what’s brought her here today I ask?

By this time the woman’s relative – a sister? a co-wife? someone equally wizened and elderly at any rate – has come back from wherever she was and conversation resumes between her and the nurse at a more normal volume somewhere at head height. I stay where I am on the ground level with the patient – she has enough sight to tell at this short range that I am one of the medical “kawajas” (“foreigners”) and starts urgently gesturing at herself – her arms, her back, her knees… pretty much everywhere.

I’m baffled to begin with but with the translator a picture gradually forms. Joint pain. Deep sensation not peripheral. Knees, hip, back… getting on for over a year now. Even though this woman cannot feel pain in most of her body and this is what has crippled and blinded her to begin with, what is crippling her now is nothing more exotic than ordinary, everyday, common-or-garden arthritis.

In some great sick sort of a cosmic joke this woman has been robbed of pain for years and is now being given it all back.

Leprosy. Should. Not. Exist.

It’s up there on a list of things that people should not have to suffer in this day and age – it’s the 21st century for God’s sake – like rheumatic fever, dying in childbirth, polio, all of which are nigh unheard of back home. It sounds like ancient history and that’s where it should be, in the history books with small pox and bubonic plague, not out there shuffling around in human form and reminding us of what a god-awful mess we have made of this planet with its politics and economics and financial crisis bollocks that some countries are off the top of the scale wealth-wise and others are so impoverished that a well-functioning health system (let alone a social care one) is still a distant dream.

But that is why I’m telling this tiny, five-minute story from over a month ago. It’s been so hard to write about this woman but I want to make her story matter. She is totally anonymous, I can’t even remember her name but I will probably never forget her and I think her situation and life deserve telling. Just because I’m out here working in a developing country (and trust me half the time I don’t even feel like I’m helping much) doesn’t mean that people at home can’t make a difference too. Buy fair trade. Don’t support sweatshops retailers. Stop whining about petrol prices. Support medical research for neglected diseases like leprosy. Give an Oxfam goat for Christmas. Or if that’s too hard (and I’ve been there, I haven’t entirely shed my former life, and yes it is hard) then maybe just try this – next time you stub your toe, or skin your knuckles on a wall, or cut yourself while you’re cooking, just pause for a second and be grateful for this amazing weird healthy brilliant blessed body you’ve got that tells you when you’ve hurt yourself. Because some people don’t even have that.

(For a truly great (?) book on leprosy and the humans and healers behind the disease look up “The Gift Of Pain” by Dr Paul Brand who pioneered leprosy research and treatment in the mid twentieth century. I read it about five years ago and was so blown away by its humility and human scope that after finishing it I went on a first date with a guy I had recently met and realised part way through the evening with a faint sense of horror that I had been enthusing about leprosy treatments and centres for a full half hour over dinner. To his great credit this lad still finished his food and somewhat unaccountably still asked me for a second date afterwards. To find out more about research for neglected diseases check out www.dndi.org one of MSF’s partner organisation. I’ll get off my soap box now. Thanks for hearing me out.)

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15 Responses to Hands up who’s heard of leprosy?

  1. John Trevett says:

    Dear Emma – It is just great to read your blog. It is no suprise to me that Leprosy is still out there 35 years ago when I was in West Africa prat of my ‘patch’ was the Leprosy hospital – Ok I was mending water pumps, not treating people, but at least I am aware of the problem.

    Well done for giving a voice to the voiceless. If you can do You Tube – just look for a Graham Kendrick song ‘Beauty for Brokeness’ he wrote it for the 25 year celebration of ‘TEAR Fund’, you will probably agree with all of the song.
    I share your anger about the systems – but at least you are doing something about it. Where I just get old and look for retirement.

    God Bless you, Emma.

    John

  2. Hi, Your article is very interesting, indeed you achieved what you intended to do, giving a voice to that lady. You may not feel that you were not helpful, but the fact you stayed such a long time must have brought a lot of happiness to many you might not have seen or felt. My experience is the same, I work with the Leprosy pts and ancient tribal people in South India ,out in the sticks with cerebral malaria all around. At the end of the day, you have done what you did, because our Lord said LOVE ONE ANOTHER AS I HAVE LOVED YOU.( John15:12)

  3. Mariko says:

    Such an excellent piece. I read that book years ago as well and will never forget it and its message. Thank you for all your honesty and for sharing this woman’s story with compassion, clarity, and an important message.

  4. Charley says:

    Thank you, I love honest, thought provoking entries!! I saw a lady with leprosy outside her house in an old people’s compound in Mozambique & the friend I was with (a doctor) who visits regularly told me exactly the same; leprosy.should.not.exist.

  5. I loved this blog which I found by chance on Facebook. My response to the question was to write a novel to raise money for people suffering from leprosy. Please read my blog and buy ‘Every 4 Minutes’. Thank you

  6. chandran solomon says:

    Many people think of leprosy as an ancient disease that has long since disappeared, and I think that it is so important that you are reminding people that it is still around and that you are making this horrible illness known for what it is.

  7. Stefan says:

    Hey Emma, thank you for such an amazing story, the part that affected me most was the fact that there’s no response to blink and subsequent blindness. It’s horrible and you’re totally right.. Disease such as leprosy should be only in the history books. I hope to one day be like you. You and everyone at MSF are my heroes.

    Take care

  8. Deepika says:

    Great writing Emma. This blog reminded me of my 3rd year medical training!!

  9. Brandi says:

    I always love reading your blogs the most. It’s good to hear you’re enjoying the work which you have an incredible gift for and which I hope you continue to do with MSF. I only hope to follow in your footsteps. Thanks for sharing your valuable time and taking a moment to write!

  10. penny Pedley says:

    Emma, thank you. Your writing always comes so much from the heart and touches people deeply. I am sure there are so many effects of your work, and of your loving touch, that you will never know. Be encouraged. We can all only make a small difference – the important thing is that we do! And you do.

  11. Eric says:

    Thank you for the beautiful post. Thank you for your inspiring work.

  12. Lindsay says:

    Thank you, what an incredible post. Many people think of leprosy as an ancient disease that has long since disappeared, and I think that it is so important that you are reminding people that it is still around and that you are making this horrible illness known for what it is. My Grandpa was in charge of the palampur leprosarium in India for 14 years and met my Grandma (a nurse from Australia) who worked there also. He wrote a book on his time there called The King’s Salt (Eldon Davis). Reading his book and hearing their stories over the years has always made leprosy a very real disease in my mind and your article was a stark reminder that leprosy is still present today. Thank you for sharing your experience with us. Your words and actions do more than you could possibly know or imagine. :) Keep up the incredible work.

  13. duckrabbit says:

    Emma, thanks for sharing that.

    I used to work opposite the leprosy hospital in Addis Ababa so this resonates.

    You are a wonderful writer and the proof of that is how much your post made me feel.

  14. Jill Tremellen says:

    Thank you Emma for another fascinating Blog, I will print it off for visitors to the Quiet Garden tomorrow. We are so interested in the life you are leading and by hearing first hand feel just a little more in touch with a world that most of us here will never experience. Our love and prayers. Jill

  15. Kaush says:

    Hey Emma, thank you for giving this patient a voice. Even if you don’t always feel like you are making a difference, the fact that you try is important. Here’s to sending leprosy the way of smallpox – & hopefully without such toxic treatments.

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