The forgotten people
Sunday, May 11, 2008 – By Conor Creighton
With its biblical connotations and low priority in the medical research stakes, few are aware that hundreds of thousands of people are still suffering from the living hell of leprosy.
The day is hot, the lights are low, and the operation room smells so strongly of iodine that you could be swimming in the stuff. With a few dashes of the blade, a strong tug on the tiny white bone and two thumbs up from the patient, it is all over. The toe is free.
Doctor Krishna places it on a small tin tray for the patient to see. It looks like an offering, or the last cocktail sausage on the plate – the one etiquette dictates never gets eaten. The patient smiles. This is not the first toe he has had amputated, nor will it be the last.
‘‘We’re a bit like a prison for young offenders,” Doctor Krishna says as he sews the remaining skin up with thick fishing line. ‘‘We take them in, we treat their wounds, we care for them till they’re better, but we know they’ll be back.”
‘‘When were you here last?” he asks the patient, who looks down at his foot. ‘‘Last year,” he says, ‘‘for the little toe.”
It’s business as usual in Lalgadh leprosy hospital in the south-eastern Terai Plains of Nepal. Lalgadh is the busiest leprosy hospital in the world, yet it has a staff of only three doctors and seven nurses.
On an average day, among the hundreds of people who present with various complaints, they will discover up to 12 new cases of leprosy. These range from patients with the small white spots on their arms which denote the early stage of the disease, to those who are – literally – being eaten alive.
Such people are generally so incapacitated that they arrive at the hospital gates in ox carts.
For Krishna, the worst part is the smell. ‘‘The rotting flesh from the lesions smells like nothing else. When we go out into the field looking for leprosy sufferers, the people who have to leave their village or go live in the woods, the smell is often how we find them.”
Leprosy has existed for thousands of years and the disease was once present on every continent in the world. Medication introduced in the 1940s and a global improvement in immune systems led to a dramatic reduction in its prevalence in the latter half of the last century. There are now fewer than two million leprosy sufferers worldwide.
However, it remains an infectious disease which, it is believed, could be passed through the respiratory system. ‘Believed’, because even though leprosy has been around since Old Testament times, there is still little known about it. Doctors working to cure and prevent the disease base much of what they know on assumption.
A vaccine is yet to be developed and the only treatment for sufferers is a trial and error-style multi-drug programme so severe that side effects include hepatitis, psychosis and a violent reaction where the skin peels off.
While the respiratory route is considered the most likely way of transmission, doctors aren’t sure how people contract it. Another belief is that leprosy is passed through touch and newer theories suggest that it may even be transmitted by insects, who in turn might have picked the disease up from chimpanzees or armadillos – which are carriers but don’t actually get infected.
Despite the horror of the disease, leprosy doesn’t look like it will become any less of an enigma any time soon. The World Health Organisation (WHO) has called it a neglected disease, meaning that funding originally intended for research into the disease has gone elsewhere, which is not good news for sufferers.
The fact is, the disease could do with some good PR. While cancer has Bill Gates and Aids has Bono, leprosy has no celebrity support. It’s an unattractive field for researchers, and doctors don’t want to specialise in a subject that involves lancing ulcers and amputating legs on a daily basis. As a result, it’s slowly being forgotten about.
A previous WHO plan to eradicate leprosy by 2000 was shelved for the more realistic strategy of eliminating it. For a disease to classify as ‘eliminated’ it must be contained so that only one in 10,000 people in any given population catch it; eradicated means it is wiped off the face of the planet.
Today, the disease has been successfully eliminated in all but four countries: Mozambique, Tanzania, Brazil and Nepal. While poverty is a huge barrier to its elimination, the tangled mess of myth and fiction that surrounds the disease has also hampered work in the area by creating a culture of stigmatisation, from the country’s doctors right down to its rickshaw drivers.
A ‘leper family’ will have difficulty finding jobs, partners for their children or even sympathy, as the predominant Hindi culture supports the idea that leprosy is retribution for wrongs done in a previous life.
Lalgadh aside, doctors and nurses from every other hospital in southern Nepal turn away anyone who as much as displays warning signs of leprosy.
Here, the biblical image of crumpled characters in rags and loose bandages, ringing bells to warn of their approach, is not just something for the history books. ‘‘We find a lot of our patients at the end of the road, out on the east-west highway. We don’t know how they get here. People must just put them on the bus and the drivers know to drop them off outside the hospital,’’ says Krishna. ‘‘Some of them can barely walk.”
However, leprosy is only mildly contagious and further, only affects people with low immune systems. The chance of a healthy Nepalese person catching leprosy is remote; the chance of a western person catching it is about as likely as a piano dropping from the sky and landing on top of their head.
The US reports new cases of leprosy every year, but all from recently arrived African or South American immigrants. In the remote countryside of Nepal where subsistence agriculture is the norm, malnourishment is common, and the only certainty is the daily blackout, maintaining a strong immune system and avoiding disease is not easy. At Lalgadh hospital, nothing is easy – let alone getting there in a country rocked by regular periods of political unrest and strikes.
A bundh is the Nepalese word for a strike. But unlike strikes in the west, where people down tools for the day, in Nepal people continue to work but close the roads to all traffic. Also, unlike our strikes, the impetus does not come from the workers but from the militant groups operating in the area.
Lalgadh hospital is situated at the junction of a major conflict zone between the indigenous Madheshi tribe fighting for autonomy, the Nepalese military and the Maoists rebels fighting for control of the country.
On the day we arrive the Madheshi have called a bundh and as we travel to the hospital we pass a burned out shell of a bus – its driver having ignored the previous bundh a week ago. Two people were burned inside the bus. To ensure that this doesn’t happen to us, we have white flags and a giant blue ‘H’ for hospital attached to our jeep, and a member of the Madheshi tribe rides up front.
The hospital began as a wooden hut on a patch of scrubland infested with scorpions, tarantulas and cobras, but in 1994 it began to be funded by the British and Irish charity, the Nepal Leprosy Trust. Fourteen years later, it has expanded to house over 150 in-patients, the hospital staff and all their families. The scorpions, however, are still here.
It is a beautiful, tranquil location for a hospital which is filled with sufferers of one of the world’s most gruesome diseases. Birds sing in the trees, wild garlic delivers a strong perfume, and buffalo sleep in the long grass. On clear days you can make out the small white tips of the Himalayas from the top of the watchtower.
In the cool evening, staff play football with their children on a proper pitch with goal-posts, the patients sit down together to eat huge plates of dahl baht and rice and the only moans in the middle of the night come from Jackals skirting the perimeter fence.
The hospital was the idea of English missionary Eileen Lodge, who worked to feed and educate the children born in the leper colony in Nepal’s capital, Kathmandu.
One of the children she helped was Krishna, as both his parents and grandparents had leprosy. The 40-year-old doctor had been surrounded by leprosy all his life, but had never shown any symptoms of it. ‘‘I think that’s why my resistance is so strong,” he says, before joking: “But I still check my arms for spots every now and then.”
Krishna says his mother had deformed claw-hands and her leg had to be amputated. ‘‘It was really hard growing up. My father had no deformities and worked and my mother was on her own raising the family. Other children called me ‘leper’ in the streets,” he says.
The doctor was put through school with the help of a Swiss and a Dutch charity, after which time Lodge sent him for training as a leprosy doctor. The hospital’s lab technician is also a son of leper parents, as are many of the nurses.
While pretty from the outside, inside the hospital’s wards and operating rooms remind you of something you might have seen on M*A*S*H: chicken wire for windows, beds that are more rust than metal and an X-ray machine so old it’s dangerous for both patient and operator.
The doctors perform skin grafts and amputations under single-bulb lamps that give off about as much light as a mobile phone. They have two theatres: the ‘‘clean’’ one and the ‘‘dirty’’ one. The dirty one is where they do amputations. When the daily blackout commences, all lights are run off a small generator, but if the roads have been closed by whichever tribe is protesting that week, then they can’t get fuel for the generator and the hospital is effectively shut down – thankfully this doesn’t happen too often.
Despite the fact that they do a job no one else wants to do, lack of funding means the medical staff at Lalgadh work for half the salaries that they would get in a state hospital. Yet the level of care that they extend to the patients at the hospital would lead you to believe they were running an exclusive clinic for rich patients.
How leprosy begins
Leprosy starts in the peripheries: toes, fingers, eyelids and skin. Someone with leprosy feels no pain, just the sensation that bugs are crawling up and down their skin, followed by the slow loss of feeling in certain parts of their bodies.
Limbs don’t fall off – they rot. It’s an incredibly slow process, described by the patients at Lalgadh as a ‘‘living hell’’. It doesn’t kill you like other diseases do. Left untreated, an Aids patient can die within a year, but with leprosy you can live a long, long life.
Bakumari, a tiny shell of a woman with short grey hair and limbs that poke out from under her sari like the branches of a blackthorn tree, is one of the most critically affected patients at the hospital. She can’t tell you how old she is, but can say she was born the same year as the great earthquake of Nepal. That took place in 1934,making her 74 years old.
Bakumari, who has had leprosy for 14 years, says she ‘‘thought it was a curse of God’’. Part of her hospital treatment involves education about leprosy; teaching her that it’s not a form of divine punishment or karma but a simple disease. ‘‘I know that leprosy is a disease,” she says, ‘‘but I still think maybe I was cursed.”
It’s hard to disagree. Bakumari has no sensation in her feet or hands and is blind since her disintegrated eyelids left her exposed to infection. Flies land on her nose and eye-sockets but she doesn’t feel them. A cobra could slide out of the grass and wrap itself around her feet and she wouldn’t have a clue. This intelligent old woman is physically less capable than a two-year-old.
The saddest thing for the staff at Lalgadh hospital and all those working in the field of leprosy is that Bakumari’s physical destruction could have been prevented easily.
‘‘When she first saw the signs of leprosy,” Krishna says, ‘‘she covered herself up. She was ashamed. When we found her, she was living by the edge of a riverbank in a small hut, all on her own.”
If Bakumari had entered the hospital in the initial stages of the disease, she could have retained feeling in her limbs and the use of her eyes by entering its multi-drug programme, and not have lost her feeling or the use of her eyes. Instead, she travelled to see witch doctors and medicine men who sprayed her in chicken blood and convinced her to hide her leprosy.
But a leper covering up their skin doesn’t fool anyone for long. As the feeling disappears from the skin, a person loses the ability to protect themselves and they don’t notice when they get a cut or a burn.
They can walk on broken glass and not know. Ulcers form in the soles of their feet and they only find out when the smell of rotting flesh catches up with them. Bakumari’s community recognised she had leprosy from the smell and sent her away to live on her own.
Blind and with no feeling apart from the most acute pain, she had to forage for wood, light fires and boil water on her own. ‘‘I was ready to die there,” she says, ‘‘I had decided that would be the place I would die.”
When she was discovered by the Lalgadh field team, Krishna spent hours treating her, removing the rotting flesh and ulcers around her knees and feet. With no family she now refers to him as her father.
Fieldwork, he says, is the future of leprosy treatment. If the doctors can get out into the countryside and check people for early signs of leprosy, then they can stop the disease before it has caused irreversible nerve damage. If people can be organised to take care of themselves, even better.
In Kuwarampur, about half an hour’s drive from the hospital, a self-help group is run with seven people who are cured of leprosy but have been left with the physical deformities of the disease. Their feet and hands need daily attention to avoid infection and further damage, so they meet up in full view of the local community and wash and rub oil into their skin.
Up to two years ago, such an open meeting would not have been possible, but the Kuwarampur leprosy sufferers have managed to rejoin the community they were once sent away from. They’ve defeated the stigma of the disease and with the help of the hospital, have set up a micro-financing system, bought buffalos and rickshaws, and entered the workforce again.
They are also educating those around them about the need to get treatment for the disease early.
Their hard work pays off when a patient arrives at the hospital early. Ram is 14 years old, and when his uncle spotted the tell-tale white spots on his face and arms he sent him to the hospital. In six months, Ram will never have to worry about leprosy again, and will have no physical deformities or nerve damage. He’ll be able to go to school, work and have children.
Australian Graeme Clugston oversees operations at the hospital and is the only non-national staff member. ‘‘If we get the message about self-diagnosis out there,” he says, ‘‘then we won’t have people coming in here with ulcers and rotted flesh any more.
One day in the future, we won’t be a leprosy hospital, as there’ll be no need for one.” Clugston’s words underline the fact that global numbers of leprosy are dropping rapidly. Only 250,000 new cases were discovered in 2006, a drop of over 40,000 from 2005.About 10 per cent of these new cases were children.
However, at Lalgadh hospital the numbers haven’t so much dropped as plateaued. ‘‘I don’t know why,” says Clugston, ‘‘maybe it’s because our reputation is so good and people are coming from all over Nepal and northern India to be treated. We are the only hospital in Nepal where the numbers aren’t dropping significantly.”
When asked if he can imagine the end of leprosy in his lifetime, Krishna says: ‘‘Leprosy is a mystery. It’s always been a mystery. In my lifetime, I don’t know. In my children’s, maybe yes. Please God.”
The WHO has a ‘Final Push’ strategy for leprosy elimination with self-diagnosis and multi-drug therapy at its core. The last big disease it managed to eradicate was smallpox, and that was nearly three decades ago.
Ridding the world of leprosy would be a major boon for an organisation which has not had much to show for its efforts since then. There is a sense of urgency among experts that now is the time to act, before the disease mutates or becomes resistant to the multi-drug therapy.
That sense of urgency is nothing like the feeling the Lalgadh staff have when they know that tomorrow and the day after, and the day after that, they’ll have people arriving from dawn with stumps for feet and claws for hands, confused as to why the gods have punished them.
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