Leprosy Eliminated? Togo

Documentary, Photojournalism

MAHAMADOU KEFAS

Mahamadou was 20 when he got leprosy. I spoke to him at Koloware’s Centre de Sante, formally Centre de Lepreserie, a Catholic Mission near Sokode in Togo, West Africa. He was born in neighbouring Benin, and was working on a farm in Anie with his father when he noticed a cut on his arm that he hadn’t felt. He realised that his entire body was going numb. I spoke to him as he sat in his wheelchair outside the wound care room where Tchedre the nurse was doing dressing changes for several patients at 7.30am on a Friday morning. Most of the patients who were due to have their wounds looked at had not turned up due to heavy rains that morning. This is not uncommon, but unchecked wounds do get worse. Stones often turn up in foot wounds and infection sets in very quickly. It is these infections that result in rotting flesh that drops off or requires amputation, leading to loss of digits and limbs.

Mahamadou told his father about the symptoms and was taken to a hospital where a doctor correctly diagnosed it as leprosy. He was due to go into the local clinic near where he lived in southern Togo three times a week for injections. However continuing to work on the farm he suffered more cuts which started to get infected. Word spread that he had leprosy. No-one would hang around with him anymore. If he went out people would shy away from him. He told me that his friends would see him then simply turn around and run away. He lived with his father who stuck by him, but the rest of his relatives did not visit or speak to him. Eventually he stopped going out completely. The only people he spoke to for several years were his father and the doctor. His Uncle heard about Koloware and his father brought him up to the Leprosy Centre. His father visited him every Saturday for 4 years before he died.

He now lives in a small room in a compound with a total of five rooms, each housing a patient. He is the only one of them that does not have family. The leprosy bacterium (Mycobacterium leprae – closely related to tuberculosis) that causes the numbness is no longer active in him. He has no right foot, no digits on his left hand, cannot feel any part of his body, is blind and according to the World Health Organisation does not have leprosy. He has lived in Koloware like this, relying on food and support from the sisters of the Catholic Mission since the 1960’s.

Above and below: Mahamadou eats alone in his room. He is blind and can’t feel what he’s touching, so makes sure his food bowl is always in the same place between his legs so he knows he’s picking up food. He has no fingers on his left hand, mainly from burning his fingers while cooking during early years at Koloware.

Above: Mahamadou gets a check up every few days at the health post about 40 metres from his house. Missed appointments in the past have lead to the types of infections that took his right leg away from him.

Above: Mahamadou is numb over almost his entire body.

TCHEDRE WALLAKASONA AND THE KOLOWARE LEPROSY CENTRE

Tchedre’s Uncle was a nurse at the Leprosy Centre and encouraged him at 17 to come and work here. He soon learned that despite much help being needed for the 300 ‘lepers’ (at the time) at Koloware there were very few doctors who would even go near them for fear of contracting the disease. The sister who was in charge of the mission at the time saw potential in him and with the private funding that the centre gets from European (primarily German these days) individuals sent him to the nearest town, Sokode to get trained as a nurse.

Despite retiring 5 years ago, he still comes in three times a week to check and clean the wounds on many of the patients. He described the attitude of many of his patients as like that of children: “Every day you must bring them in to take their medicine, or get dressing changes. But they can’t feel the pain, and I see them handle red hot pans with their hands. If they have work to be doing at home (such as cooking, or even farming for the few that are able) they choose that over coming in for their check-up. When they do come in I sometimes see stones lodged in their wounds (causing infections) because they haven’t been checked in several days. I even tell them not to go into the field to work after I’ve changed their dressings, yet they do and get dirt all over them”.

He is dealing for the most part with the very poorest people that have received no education. Sometimes it is hard to have sympathy for those that don’t seem to want to help themselves, but in the cases of these men and women their priorities are always going to be food, water and whatever family is still around them above a cut that does not affect them at present and that does not feel painful. Such is their way of life. Tchedre obviously cares enough to carry on having retired.

He told me that in the central region (where Koloware is located) about 50 people get diagnosed with leprosy each year. It’s not exactly a ground breaking figure, but such a feared disease also means that many will be hiding their symptoms – like almost all of those that attend Koloware Health Centre once did. Women especially suffer from this – if the husband doesn’t throw them out outright they’ll almost certainly be hidden away for fear of bringing shame on the family. Leprosy is not a fast acting disease, developing over many years. But with most of the people that get it ignoring the patches and numbness out of ignorance or fear, the later stages are often reached even in these current days when the Multi-Drug Therapy (MDT) cure is readily available worldwide.

They are able to take the drugs at home, only coming in to Sokode (where the central region’s leprosy advisor is) to pick them up and for the occasional check up. But too many times have professional, trained nurses in Sokode hospital refused to touch those with the disease, helping fuel the stigma. Many patients are sent to Koloware for these dressing changes. With the exception of the foreign missionaries (like the director – Sister Antonietta from Italy), all the staff in the health post have been born in Koloware and grown up around those with leprosy. However even in Koloware there’s fear about the disease, despite being educated in how easy it is to cure if caught early.

Just a few weeks before I arrived some farm-hands had seen patches on a sixteen year old co-worker. They suggested it was leprosy, but the boy covered them up with his shirt insisting it was from a voodoo curse that was put on him – the more bearable burden. Fortunately they confronted him later and he agreed to go for a diagnosis at the health post, where they confirmed it was leprosy. Within two weeks he was no longer contagious; however he will need to make sure he continues taking the MDT for at least a year before the bacteria has completely been eliminated. His colleagues had caught the disease before any nerves had been killed, but if they hadn’t the numbness would remain for the rest of his life, and he would have to be extremely careful as a farmer that those areas of anaesthetised skin don’t get damaged.

There are only a couple of the ‘lepers’ that attend the markets – when people from all around the village come to sell, buy and trade in Koloware. They fear being shunned and rejected. Those that have small businesses rarely attend their own stalls, knowing people will not buy from them. They instead get family to sell for them. Others have little choice, hoping the busyness of the market will pull attention away from them they go about buying the food they must have to survive. Since the leprosy post was founded here 63 years ago there has been only one marriage between a ‘leper’ and a ‘non-leper’. Social mixing is relatively uncommon.

Above: Patients wait outside the Health Centre for dressing changes and check-ups.

Above: Assistants from Koloware help patients clean out infected wounds under the tap before they are looked at by the nurse.

Above: When you can’t feel your feet you can’t tell when your feet get too big for your shoes or when they are crushed. Permanent disfigurement can make walking extremely difficult.

Above: Tchedre Wallakasona, who has worked at Koloware since 1967 and despite retiring five years ago still comes in three times a week.

Above: Tchedre examines a regular patient while a child looks through the curtain from the room next door. The Health Centre now attends other diseases and injuries as well as leprosy, it’s main purpose when it was founded over 60 years ago.

Above: A ‘leper’ makes twine to sell to bind straw onto roofs. I saw a few patients doing this job even though few have fingers, and some are entirely blind.

Above: A patient passes the time with a rolled up cigarette.

Above: This man has been blind for over thirty years. He also spends much of his time making twine for roofs.

Above: Leprosy affects the eyes in a number of ways that can result in blindness. In this case it has prevented the eyelids from closing and protecting her eyes from dust and dirt. Tchedre is reaching out to her and berating her for missing her dressing change the previous morning due to the rain.

Above: A ‘leper’ buys vegetables from the Saturday market.

Above: Outside the Mosque at lunchtime on market day, a faithful patient must remove his prosthesis as well as his footwear before entering.

AISSATOU ASSOUMANOU

Aissa was brought up in Sokode, red patches started appearing on her face and she was diagnosed with leprosy. She was 12 at the time. She started the treatment, but stopped going when she was married at 13. Her husband told her it brought shame to the family, so she pretended she had never had it. In the next few years she gave birth to a boy and girl by him, but patches started to appear again in her late teens and her husband left her. “I was sad” she recounted wistfully, “but not because he left me, because the leprosy had come back again”.

Her parents took her to Koloware where treatment began. After four years of living in Koloware and taking the treatment she got married again, to a fellow ‘leper’.

While I was with my second husband, my first one came to visit me. He saw I had built a life around me and was happy. He was jealous and angry. But I wasn’t going to go back to him, even after my second husband died from leprosy.” Her second husband had built a home for her and their two new children, but after his death a storm destroyed it while they were sleeping. She managed to get her children out before the roof collapsed in on them. The director at the time helped rebuild her house with the funds from private donors. Of her four children three are living in Cotonou in Benin, and one in Sokode. She sees them once a year after the Islamic festival of Tabasci.

She is lucky in that her leprosy injuries are easier to hide than others, and she sells a few things on market day; ground nuts, cigarettes etc. “I used to sell much more, biscuits and sweet snacks. However over the years my custom has got worse. If the director didn’t provide me with ingredients to cook with I wouldn’t have enough to feed myself”. Last week the patient living in the room next to her died. She will use the room to house her chickens until somebody comes to fill it up.

Above: Aissa thinks back through her life as my questions brought up past memories.

Above: The courtyard where Aissa lives. Her room is one of those on the block on the right.

Above: Aissa cooks in the light of her doorway, away from the spitting rain outside.

Above: Aissa emerges from the doorway of the room next to hers. It was vacated last week by its owner who died of infections from leprosy. She keeps chickens in it now.

Above: The infection on the bottom of Aissa’s foot. She is glad that it is easily concealable.

Above: Aissa sells groundnuts and other snacks at her stall outside the yard where her room is. She used to sell much more, but business has not been good in recent years.

I only had two days to photograph in this small village. I wish I had been able to spend more time and properly got to know the lives of these social outcasts. I am trying to document leprosy in several different countries worldwide, to show that such an ancient, well-known and easily curable disease has not been eradicated because of the vastly disproportionate wealth distribution across the globe. It can only survive in people with poorest immune systems where poverty is rife, and will continue to destroy the lives of those it inhabits due to the lack of education and stigma that surrounds it. The project is entirely self-funded, and I plan to fund my own exhibition to raise awareness. If you can help in any way, with finance or advice, then please do not hesitate to contact me – info@tom-bradley.com. My leprosy work from Nepal and Nigeria is on my website – www.tom-bradley.com.

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CMS Adidogome – a Togolese hospital.

Documentary

I got the chance to visit a local hospital – CMS Adidogome. A couple of nurses went to meet the Director there and we got a tour of the facilities. I don’t have a huge amount of information about it – Mercy Ships did a screening there at the start of the field service, but as to how many people it deals with I have no idea. Unlike the UK, but like most of the rest of the world health care in Togo is not free. That could explain why there were only a few patients there.

Coming in through the entrance.

A patient waiting to be seen.

This is a poster that informs of the different ways HIV/Aids can and cannot be transmitted. Click on it to view the details – some of the captions may amuse you – bluntness is a key to the poster. Some of the captions are questionable in their reliability too; I am not an expert in Aids, but I know that some of the ”nul risque’ captions aren’t entirely accurate.

The hospital director gave us a tour.

The above price list refers to the cost of different echographs and examinations. The price is in CFA – of which there are 513 to the US dollar. The average wage is just over 1000CFA per day.

A young girl is examined in a room also used for minor surgery and wound care.

A boy stands under the checkout where patients pay for the medical services and supplies they’ve received.

The Maternity ward notice board.

A mother with her newly-born child.

The hospital director and two nurses.

A Maxillofacial surgery

Documentary, Mercy Ships, Photojournalism

This is Gafar, a patient who I’m following along with Claire, one of our writers on the Africa Mercy.

He has a large facial tumour and the next series of photos show the scenes I saw in the Operating Room while Mark Shrime performed surgery on him.

This is obviously quite a tough time for a 10 year old like Gafar, you can see from his medical portrait at the top that he has not been happy in a long time due to his tumour and he is about to be put under general anaesthetic for the first time to have it removed. I was not allowed in the room for this as because it is a stressful time, it is best to have as few people as possible surrounding the patient.

Dr. Shrimes marks out where he will cut on the face before injecting local anaesthetic at crucial points.

Gafar is doused in an antiseptic solution before any incisions are made.

OR nurses, anaesthetists and surgeons make the last minute checks before starting surgery.

One of the surgical assistants makes sure excess blood is immediately sucked away – partly to make things easier for the surgeon, partly to see how much blood is being lost.

With an operation like this when a large tumour is being removed there is a lot of excess skin that flaps and can get in the way, so a lot of clamps are needed to pull it back far enough.

An this is the culprit itself on the operating table. With luck and the skill of the team it’s hopefully been totally removed, with no traces left.

The anaesthetist, Kristin attaches a pack of blood ready for a transfusion.

Some phone calls are important enough to warrant interrupting surgery.

having sewn up the flap of skin, staples are added to ensure nothing gets loose.

Gafar’s surgery is finished. At this point I left as I was on call to take medical shots elsewhere so I haven’t yet seen Gafar awake. Hopefully I will tomorrow, and I can photograph a post-op medical shot to complete the archive. I believe Claire will be doing a story about him over the next week or so at some point, so check her blog for it.

Leprosy Eliminated?

Documentary

The following clip is best viewed full screen in HD

You know that you have met people that have truly suffered when their life’s endurance is so clearly reflected in a simple portrait photograph. It is not a question of having the skill to capture a fleeting moment when they betray their horrific memories, but it is permanently engrained on their wind-swept, sun-gnarled, often grossly disfigured faces. Faces devoid of joy, where survival doesn’t seem important.

I travelled to the Terai region of Nepal for 6 weeks in February 2009 to photograph at Lalgadh Leprosy Services Centre (LLSC) on behalf of the Nepal Leprosy Trust. By the end of my six weeks there I decided to start a photographic project about leprosy across the world.

Leprosy is a curable air-borne (in water droplets) bacterial disease that affects the peripheral nervous system and the skin. The loss of sensation can lead to severe disability, including the loss of digits and limbs, blindness and drop-foot.  Equally as devastating for those affected is the stigma that surrounds the disease. Discovery that a person has leprosy can lead to complete social exclusion.

Leprosy is not a new disease; it is an ancient one. So old that most of the world, certainly the developed world, has forgotten it exists. Indeed, the World Health Organisation sets the point at which elimination officially occurs at 1 case in 10,000 people, and according to official statistics, all countries – except Nepal, Brazil and Timor-Leste – have this status. The assumption of the public in the West that it is practically non-existent is therefore understandable. Yet leprosy remains a huge problem in countries all over the globe today.

In 2007, the WHO counted 17 countries that had over a thousand new cases of Leprosy. However, these figures are likely to be – in some cases large – underestimates. These countries have been under a great deal of pressure to reach the target of ‘elimination’. Official figures are often tampered with in order to meet criteria; for example, immigrants with the disease may not be registered. In cases like in Nigeria, doctors I have met say that the numbers of cases they have seen simply don’t match up to figures that have been recorded.

 Soon Nepal will reach the official elimination figure, joining all the other countries that have supposedly conquered the problem. But even if the figures were correct, there still remains in these countries a humanitarian crisis. “Elimination” does not mean “no leprosy”; rather, it means that it is no longer a “public health problem”.

The definition of “leprosy” is confined to those in whom the bacteria are active. Once treatment is completed, they are not – officially – leprosy sufferers anymore. This is true from a medical perspective, yet the ulcers continue to develop and disabilities and deformities remain. And so the sufferer is still very much a ‘leper’, still vulnerable to intense stigma from the unsophisticated societies whose margins they inhabit.

 It’s a crisis because people affected by leprosy stand at risk of isolation. It’s a crisis because the unaffected world now believes there is no longer a problem of leprosy – it has been “eliminated”. It’s a crisis because people don’t perceive any need to put money into a problem they have been led to believe no longer exists – no need to support places like Lalgadh. Future funding in Nepal is being cut as it nears “elimination” status, just as it has been in other countries around the world.

The situation for charities like The Leprosy Mission (TLM) and the Nepal Leprosy Trust (NLT) has got even worse in recent times due to the recession. I was in Nigeria for 5 weeks from July 2009 and in that time TLM Nigeria had to sack 6 (of their 50-odd) full-time staff because of budget cuts due to lack of donations.

Part of the reason leprosy does not get the attention it deserves is because it does not affect western society – actually that’s not quite true; there are currently around 5000 cases of leprosy in the United States. Still, leprosy is only present in very poor societies where a poor diet and lack of sanitation mean a poor immune system; allowing the leprosy to infiltrate the body. As it (generally) doesn’t affect the west very little money has been put into it compared with what it needs to stamp out the bacteria, marginalisation and to care for current disabilities.

Khokana, a Leprosy colony outside Kathmandu is an example of the inhuman segregation that the leprosy stigma causes. There are around 250 people living on the colony, 160 of which have a disability caused by leprosy. The rest are family who have no choice but be brought up on the colony. It’s only funding comes from the government. Each ‘leper’ gets 400 rupees (about £3.40) per month to live off. Even in Nepal this is nowhere near enough to live on. The fact that a government funds (very poorly) a society to prevent reintegration (which supports the public notion that leprosy is incurable and very contagious) is as far as I can see totally inhumane.

Dr. Hugh Cross (of ALM) told me once of a woman he met in Nepal. He mentions her in the introduction to a collection of stories he gathered from a number of interviews with leprosy-affected individuals from Nepal:

“A character who was not included is one who probably had the most profound influence on the conception [of this compilation of interviews]. It was through her that I began to see beyond my own interpretation of suffering. She is a small woman called Thamini Majhini. She is an illiterate hill woman, shrivelled by hardship.  Her amputated foot is obvious to the onlooker, but was not mentioned by her as being disabling so I asked her about it. It transpired that she had leprosy for many years and was not treated. The leprosy left her with an anaesthetised foot which developed an ulcer. Because of the ulcer the villagers ostracised her, leaving her to catch fish and range through the jungle for food.  She will tell you that hunger and pain are not real hardships, they are a way of life for everybody (in her world at least) as is the rain that causes her shack to fall in year after year. Hardship is being excluded from the quarrels and intimacies of family; it is being snagged out from the flimsy fabric of village society. These she could not tolerate.  Such was her sense of desolation that one day she accosted two men on their way to cut bamboo. Having cunningly convinced them to lend her a khukri (a heavy, curved multi-purpose metal knife) to cut a branch she walked over to a fallen tree trunk, put her foot on the tree and hacked it off with the borrowed blade.”

I’ve seen begging many times before. In Kathmandu I saw beggars that had deformities from diseases like polio, TB and leprosy. I do not condone begging, though I had to admit that the only begging I’d seen until Nigeria was in touristy cities like London, Prague and Kathmandu.

One of the last places I visited in Nigeria was a town called Kuta. There I met an old man called Mohammed Damargo; he has one arm with half a hand with no fingers, no toes, and worn away palette and lips so he can’t speak clearly. Each day his son takes him to market in a wheelbarrow to beg. He has little control over his mouth and lips, and finds it nigh on impossible to eat anything else other than dried maize corn. His life is begging to fellow Nigerians barely better-off than he, in a very poor town at the wrong end of a country with alarmingly unfair wealth distribution. Yet because of his poor uneducated background and severe disabilities, Mohammed has no other way of finding money to live on.

I do not wish this documentary to be just a record for the future. It must be used to change the present situation in these countries and making the extent and seriousness of a disease that can cause complete social exclusion known to the western world is the first step in truly fighting it.  Perhaps it is naive to think that photographs can have a positive effect on the situation, but I always remind myself of what the humanitarian documentary photographer W. Eugene Smith said: Photo is a small voice, at best, but sometimes – just sometimes – one photograph or a group of them can lure our senses into awareness. Much depends upon the viewer; in some, photographs can summon enough emotion to be a catalyst to thought.”

I have photographed leprosy in Nepal and Nigeria so far, but I want to visit another 6 countries over the next few years to show how leprosy affects individuals in a variety of societies. Leprosy is curable, and there is no reason why it should still be present today.

For more on Tom Bradley’s photography and his leprosy project please visit www.tom-bradley.com.

Lalgadh Leprosy Centre, Nepal 2009

Documentary

Man with leprosy

I have chosen two photographs to put in this blog. You can see a few more and read more about my experience in leprosy-affected areas at www.tom-bradley.com. For many of the photographs I took out there I wrote down a bit about the people… name, age, location and a few notes on the way getting it changed their life. Here I was called by one of the physicians to photograph a man who had noteable skin lesions on the side of his head, but this man was sitting to the side, waiting his turn to be seen. The simpleness of the frame struck me and I took two quick pictures before hurrying inside the physicians room. I’m not sure exactly what attracts me to it; it could very well be the simpleness of the image, the wall in two colours, with this old man’s head sitting atop a poor, frail body, one eye blind from leprosy. But then again maybe it’s because, unlike most of the patients I photographed this man I saw for less than 10 seconds and his identity is a mystery to me.

Ram Ishwor

One of the things that I really need to improve upon in my photographs is relationships. I came back from Nepal and picking out my favourite photographs I realised most of them were portraits. Though there’s not necessarily anything wrong with this, it’s the relationships in photographs (usually) between human beings that can really tell the story. This photo for me sums up what I saw of Lalgadh Leprosy Services Centre. Ram Ishwor was only 14 when this was taken. His body had been reacting to the Multi-Drug Therapy that kills the leprosy bacterium hence the very swollen cheeks. As a result he was also incredibly weak and confined to a bed for a few weeks. He is one of LLSC’s long-term residents and just three weeks previously he had been bouncing around the place with a giant grin, continually poking me to take ‘just one snap’ of him. Dr. Graeme Clugston is the man reaching over touching his head (the nurse touching his leg is Graeme’s wife, Meena). He’s in fact not one of the resident doctors, but instead works in the administrative section of LLSC. However none of the other doctors were available for rounds that day so he stepped in place. I think the staff’s fondness for Ram shows through in the photo and certainly reflects the feelings I had about Ram in the few weeks I’d got used to him.