Medical aid and leprosy projects in India  

Projects giving marginalised people their dignity back  

Our work with and for people suffering from leprosy began in early 1996. Since the outbreak of their disease, these people have been living on the street as "Untouchables", begging along the roads that lead to the sacred Ganges River. Others have found some sort of shelter in the leper colonies of Sankat Mocan and Bhadhoi.

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Our project work for leprosy sufferers and their families over the last fifteen years focuses on four main issues: treatment, information, rehabilitation and continued medical and social assistance.

1. Treatment

During our first project years, we organised drop-in clinics in the streets that were open to all three times a week. Equipped with a suitcase full of medicaments, we went directly to where the poor were spending their days. We spread our plastic sheets on the ground and set up our medical equipment, including buckets of water, stools and sunscreens. As our street clinics attracted more and more people, our team of ten to twelve volunteers was barely able to keep up with the demand.

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First of all, we took care of the sores and wounds, cleaning and dressing them properly. We also showed patients how to treat their sore limbs properly and made them aware of the importance of hygiene, although few were probably in a position to follow our advice, given that they lived on the street.

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We arranged appointments with specialist consultants and organised further medical examinations and tests (for example for tuberculosis). Where required, we referred people for x-rays and ultrasound scans and took blood, urine and stool samples for testing. We accompanied and supported our patient throughout their treatment with prescription drugs.

Our specially designed shoes for people suffering from leprosy brought great relief for many. Physiotherapy, glasses, crutches, prostheses and wheelchairs were also made available to patients in need.

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The daily MDT (Multi Drug Therapy) recommended by the World Health Organisation was a complete success. Within five years, all our patients tested negative for leprosy and where thus fully cured of the infection.

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Initially, we had to overcome some deep-seated fears regarding our modern drug treatment. Patients had to be told how important it was that they take their medication daily. They also had to be made aware of the side-effects and the fact that treatment might take up to two years. Unfamiliar with modern drugs, there were initially some misconceptions. One patient showed us how he had crushed the antibiotic tablet to a fine powder so that he could rub it directly onto his sore knee. Laxman, another of our patients, came back to us after three years to return the glasses we had given him. He handed me the spectacles with the words "power finished".

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Apart from dealing with the infection, we arranged for reconstruction surgery for our patients at a specialised hospital outside Varanasi. These operations were of huge benefit to our patients, as curing the disease alone does obviously not reverse the disfigurement and other long-term effects of leprosy. Reconstruction surgery can help prevent further disability, restore sight and correct certain deformations.

During this period, we gained the trust of our group of patients and established close relationships. Although the misery and suffering was often heart-breaking, a lot of time was spent together with laughter, in a spirit of optimism and great companionship. Our patients were full of the zest for life and appreciated the good time and kindness they had been shown. Every biscuit, cake or morsel of food was broken up and shared with others, and their generosity was simply humbling.

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2. Information and awareness campaigns

From the very beginning, we saw information as a major part of our leprosy aid programme, as both sufferers and the wider community had many misconceptions about the disease. Many of our patients had been suffering from leprosy for more than ten years. They had lost fingers and tows. Yet nobody ever told them that the condition was actually curable.

To fight the stigmatisation of people with leprosy, the community needed to be made aware of the nature of the disease. Misconceptions had to be countered with facts. People had to understand that patients in treatment are not infectious and that the disease is curable. To bring our message across, we put up posters with pictures and simple slogans, distributed flyers and organised a number of events. Together with our street clinic and workshops on leprosy, we have definitely contributed to a better understanding of the disease among the people of Varanasi.

3. Rehabilitation and reintegration

For most people affected directly or indirectly by leprosy, it is very difficult to reintegrate into society and to regain their dignity. Although they have been cured, the disease has left permanent scars. As hands and feet have often become completely numb, they often suffer accidents and show wounds that have nothing at all to do with the previous leprosy infection. This is however difficult to understand for the uninformed, who simply assume that the person is still spreading the disease.

We want to assist people scared by leprosy in finding a new income and better future through help to self-help. We began with workshops where our patients were taught in crafts. By selling their products, we were able to build up some savings. Depending on the circumstances, these funds were paid out to the patients for investment in tools, maybe a shop or other source of income. We also made micro-credits available for bigger investments.

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One out of ten people in our group returned to their native village. Several of them invested their funds in a cow and now live among their families and old neighbours. Other patients settled in existing leper colonies where they built themselves a small house or moved into a vacant dwelling for which they paid a given sum to secure it as their home for life. They were thus in a position to have their family move in with them. Most former patients work in the services sector. Others who were more severely disabled by the disease teamed up with their adult children and used their savings to open a shop run by the younger family members. Seven of our patients however opted to continue living on the street.

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Today, our staff still regularly visit former leprosy patients in their villages to see how they are faring. Many of these villages are very remote, far away from cities and major market towns. During our visits, we want to evaluate how our help to self-help is improving the live of people in the long term. Our main concerns are:

  • How well integrated is the family in the village community?
  • To what extent have the villagers accepted the former leprosy sufferers, who might still show scars, within their midst?
  • Are the family and its members able to work, and what work do they do?
  • Is the family in debt?
  • Does the family live in a mud hut or proper house?
  • Do our former patients have access to clean water?
  • Does the family have electricity?
  • Do they own land or work on the land of others?
  • What is the average income in the village? What do people do to earn a living?
  • Are there family members who can read and write?

Based on this information, we can properly assess the situation of our family and provide assistance, where necessary. Most of them wish to improve their housing situation. Others would like to purchase a water buffalo, a cow, a hen-house with chickens or a few goats. Some desperately need a water pump to irrigate their land, while others might be looking for a loan for a load rickshaw.

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4. Social assistance and medical aid

After our initial group of leprosy patients were cured and fully rehabilitated, we decided to close our street clinic in 2002. We were however aware that people who were scared by leprosy still suffered from stigmatisation and needed special medical help and social assistance. In some cases, people even needed reconstruction surgery years after they had been cured. We therefore continue assisting all members of our initial patient group and their families who seek our help.

Our former patients stay in close contact with us. Many visit us in our children's homes, be it just for a chat or to discuss a problem they need help with. They keep us informed on how they are doing and let us know if they are in trouble. Many of our former leprosy patients actually have their children looked after by us in our children's homes.

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Rajesh, the second oldest of our initial children's group, is now a valued team member and looks after the former leprosy sufferers who choose to continue living on the street.

He regularly visits them, meets their children and mothers and provides them with what they need most at any given time. He brings them blankets, warm jumpers and scarves for the winter and plastic sheets during the monsoon season. Every month, he distributes cream for wounds and dressings, and organises glasses, walking aids and wheelchairs for those who need them.

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If former patients need to visit a hospital or specialist consultant, Rajesh ensures that they are seen by the right person and that all examinations are carried out as required. Together with the other members of the team, he looks after them when in hospital and ensures that all bills for treatment and medication are paid by us.

Rajesh has also become the person resettled villagers talk to if they need our assistance.

During the monsoon season, the Back-to-Life team intensifies its medical and social aid activities for leprosy patients, street children and their families in Varanasi. With the heavy downpours, the risk of infection among the poor of the city increases dramatically, and we see lots of people with recently acquired skin, ear and eye infections. In the slums, streets and leper colonies, viral infections, typhus and other diarrhoeal diseases spread like wildfire, with children most at risk.

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In our health camps, we see about 100 patients a day. It is staffed with a general practitioner, a dermatologist, a trained nurse and the two project managers of our children's rights project and Rajesh, who is already known to most patients. Apart from information and immediate medical aid, we provide all patients with a month's supply of medication, dressing material, bandages, vitamins and other products that strengthen their immune system.

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