Noma – the face of poverty

The view from our home

The view from our home

Noma, or cancrum oris, is a disease that exclusively affects the poor. It disappeared from Europe around 100 years ago although there were sporadic cases during the two world wars. It is caused by an infection arising in the mouth, usually starting as a benign gingivitis. Children who are malnourished do not have a strong enough immune system to fight the infection. The bacteria spread into the skin, muscle and bone of the face, causing a gangrenous infection. Most (about 90%) of these children die, either because of overwhelming infection or because they have lost the function of the mouth and are unable to feed. Those that survive are left with defects affecting large parts of the face. The healing process is particularly fibrotic, and the jaw is often left clamped shut.

An example of Noma

It would be unfair to post a picture of one of our patients but this photo is taken from our website as an example of noma.

Derrn, an 18 year old girl from Somalia, is one of those that survived the infection as a child. The wound she was left with affects the majority of the left side of her face. As I removed her head scaff to examine her the first thing to hit me was the smell. Instead of a cheek I found a disordered mass of gum and teeth protruding, covered by opportunistic fungal infection. The lower half of the left eye socket has been destroyed and the globe of the eye was falling forward. The cornea of the eye is scarred and she is blind from that side. The jaw is clenched shut. I asked how she eats, and I am shown where teeth have been removed to allow her to squeeze in what she can, something she’s been doing since she was four. As doctors we see many gruesome things, defects of many different parts of the body, but when a face is affected to this extent, it affects you in a different way. I’m not ashamed to admit that I made an excuse to sit down for a minute, write some notes, and compose myself, before continuing with the examination. There is no other word to describe how you immediately feel looking into a face like that – you feel revulsion. The doctor’s office is often a stage, and I acted as best I could, but I think Derrn could sense how I had been affected, because she has sensed that revulsion in every person that has ever looked at her face, as long as she can remember. She has never been allowed to leave the house and she’s painfully shy.

The treatment for Noma is complex and expensive maxillo-facial reconstructive surgery. The is no condition that poses a greater challenge to the surgeon and anaesthetist. Intubation is often nasal, using fibre optic guidance. The condition occurs in countries with limited medical resources, and affects those with no money themselves for private care. As such the condition would remain untreated if it weren’t for niche NGOs. I’m in Ethiopia with ‘Facing Africa’, an NGO based in the UK which has been working here for around 6 years. They do three missions every year, treating about 30 patients per mission. The cost is about $3000 per operation. Complex cases may need around four operations. I am working at the opposite end of the care spectrum from where I am comfortable. My interests lie in widespread cheap measures which prevent disease, rather than expensive specialised measures which treat the condition in a few. But the argument supporting NGOs like Facing Africa is strong. As long as there are people suffering with the condition, there is a need, and the charity make all their own money for this particular condition. This argument is strengthened when you meet those with the condition, those who are suffering at the extreme end of the human condition. I look forward to seeing how my opinion of NGOs like Facing Africa change during the months I am here.

Kids at the Cheshire Home

Kids at the Cheshire Home

A morning game of football

A morning game of football

We are based about 30 miles West of Addis Ababa, in the arid highlands about 2,800m above sea level, and you can feel it on the incline. It’s a beautiful setting, with fantastic views across the highlands. Mornings are fresh and clear with fog filling the valleys. There’s an abundance of wildlife. We share the compound with a troop of black and white colobus monkeys, a giant tortoise, Menelik’s bushbuck, and some wonderful birdlife. We are guests at a Cheshire rehabilitation centre. Lionel Cheshire was the husband of Sue Rider and set up the homes in order to look after unfortunates. Many in the developing world care for children affected with polio. Here in Menagesha we are guests of around 50 children who are proud to show off their various limb prostheses, donated wheelchairs and crutches. You can hear them playing and laughing wherever you are; one legged football, wheelchair races, table football, the girls in circles making crochet. They are an inspiring group and fill the air with a feeling of strength against adversity, a feeling which is beginning to rub off on our patients. It’s a pleasure again to be living in a community dedicated to the care of the under-dog.

One foot in the rave

One foot in the rave

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Meneliks bushbuck, male

We get the feeling that we are living as part of this community, not just coming in to work. The psychological care of patients with Noma is just as important as the surgical care. We are living each day side by side and it’s amazing what progress has been made in a week. A few days ago the patients stood by themselves, a state which they are so used to. Some had never met another person suffering the same condition, and thought they were the only ones, in isolation. We have watched the friendships grow, and now there is just as much laughter coming from our side of the Cheshire compound. A huge part of this is down to the enthusiasm of the two nurses who have also come from the UK, Julia and Sue. Both from Dorchester, and their first experience of Africa, they’re taking it in their stride; big games of football and frisbee, colouring books, dancing, smoothie making. And who would have thought it – birdwatching. I had packed the binoculars and extensive field guide ‘Birds of the Horn of Africa’ for personal nerdish indulgences only, but they’ve been a real hit. Everyone’s into it. Many were new to the concept of binoculars, especially our desert dwelling elder Hassanbule from Somalia. He shrieks with laughter and flaps his hands to mimic the bird he has found down the eye pieces. The birdlife is rich. Highlights include this small forest goshawk, the white-cheeked turaco, and the male African paradise flycatcher, photographed here in breeding plumage, it’s white tail feathers perhaps five times the length of the body.

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Lesson 1 – Principles of identification

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Forest goshawk

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Male African paradise flycatcher, in full breeding plumage

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Whilst the boys play football

The other nurses are Ethiopian born and trained, and an absolute pleasure to work with. All the Ethiopians we have met are kind and gentle. They are elegant and smile easily, and keen to fill us with extremely strong coffee at every opportunity. The famous coffee ceremony is often put on. The fresh beans are roasted on a hot plate for all to smell, then crushed. The coffee makes three rounds – arbor, bereka and toner – starting strong and becoming weaker. The situation sums up what I have seen of Ethiopian culture – the ceremony seems to have Arabic roots, whilst the humour of the conversation is classically central African. It’s a beautiful and rich mix of influences from the north and the south.

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Our beautiful nurses – Merron, Marima and Aden

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The coffee ceremony

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Nurse Merron with Midiwe who had flap taken from her back last year to repair the defect which affected the left part of her face. Due for her next operation next week.

We have just 9 patients so far so things have seemed a little quiet, but there is no better opportunity to enjoy being part of delivering proper holistic care. This is a privilege not often afforded to the doctor, particularly not in the UK. Yesterday was epiphany and many patients would not make the journey until they had celebrated with their families. We are expecting 6 new patients traveling from South sudan today, and perhaps another 10 at the weekend, when the surgical team arrive, at which point the real work begins.

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Fosier, the guardian of one of our patients.

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Getting the hang of it and going solo

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9 thoughts on “Noma – the face of poverty

  1. Fantastic Blog – very informative and yes, intense. Keep up the extremely good work as you are literally changing lives. Look after my sister Julia please xx

  2. These children and adults are in desparate need of care and normal contact with people to bring them back amongst us. Thank you Jack and to everyone involved.

  3. Lovely blog, it really gives a feel of what it is like over there. Glad it is going well for you Sue C! I will look forward to reading further updates.

  4. Fantastic to be able to read this and feel a little closer to the action. Amazing what unexpected pleasures you’ve brought into the lives of these people. Whoever would have thought that binoculars would have been such a big hit! Good luck, if that is an adequate sentiment to wish all the team as you approach the surgery weeks. Keep taking the photos, Julia! Lots of love xx

  5. so good to hear how you are all getting on,
    julia goes to the same church as me, we all miss her. give her my love, and take care of yourselves, i know god is with you and your patients.
    love to you all
    gill x

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