LEPROSY. The word evokes images of an ancient disease that plagues the bodies of those it affects to such an extent that leprosy-affected people are cast out of their homes and forced to live in caves while scrambling for scraps of food. While that may be the movie interpretation of leprosy, the reality for people across India is not much different. In states across India, people with leprosy are forced out of communities and into leprosy colonies, according to leprosy NGO Atma Swabhiman. Leprosy colonies, or leper colonies, are quarantine zones that are completely cut off from access to water, sanitation, medical care, food and everything else a human being needs to survive.
Leprosy still exists today and affects a quarter of a million people each year across the world. Of that 250,000, India accounts for over 50% of the world’s new leprosy cases, according to the Government of India. While there have been efforts since Independence to stop the spread of leprosy and treat those who are affected, leprosy is still spreading and crushing the lives of those it affects. People in leprosy colonies have no access to education and employment and because of this, they have no chance to improve their lives. Furthermore, their children are also forced to spend their entire lives in the leprosy colonies – even if they don’t have the disease.
Atma Swabhiman is a leprosy NGO based in Jharkhand that reaches out to people living in leprosy colonies and provides them with basic necessities such as access to food, water and medical care and helps them improve their futures by offering education to children and skills training to adults to empower their lives. To eradicate begging is one of the main aims of Atma Swabhiman and the NGO’s skills training programs enables people to get decent and dignified jobs and end the dependence on begging for alms to survive. What makes Atma Swabhiman a unique leprosy NGO is that its founder Sailendra contracted leprosy at the age of 7 and lived in one of India’s many leprosy colonies. Hear his story here in this short video we captured when we visited Sailendra in the leprosy colonies:
What is leprosy?
Leprosy is also known as Hansen’s Disease and is caused by the bacteria Mycobacterium leprae and Mycobacterium lepromatosis. The disease mainly affects the nerves and causes the affected person to lose sensation in parts of their bodies. Because the bacteria affects the nerves in fingers and toes, it leads to numbness, and if there are any injuries to the fingers or toes, it goes unnoticed. But severe nerve damage weakens the bones and muscles so much that they begin to disintegrate and lead to the loss of limbs.
Leprosy is a feared disease because it is contagious. But unlike other conditions such as COVID-19, leprosy cannot be spread with a handshake or a hug. It requires droplets from the nose or mouth to be transmitted from the affected person to another over prolonged periods of time. Furthermore, leprosy is curable. Through multi-drug therapy (MDT), the germs that cause the disease can be destroyed and the patient can be cured.
In addition to the fear, there is also the belief that leprosy is a curse and this causes people to shun leprosy-affected people. Atma Swabhiman is a leprosy NGO that is fighting this stigma while helping to uplift and empower people in leprosy colonies in Jharkhand and surrounding areas.
Growing up in the leprosy colonies
Atma Swabhiman is a leprosy NGO that was founded by Sailendra, a person who has extreme compassion and empathy for people with leprosy because – he had leprosy. Sailendra contracted leprosy when he was just seven years old. But because of timely intervention and multi drug therapy, he was cured before the disease attacked his flesh. In the leprosy colonies, begging for alms is the only option people have to find food to eat. Sailendra remembers looking through the alms they received, searching for candies or biscuits to satisfy his crippling hunger. Because Sailendra grew up in the leprosy colonies, he experienced firsthand what life is like for people who are written off from society as outcasts.
What inspired a boy from the leprosy colonies?
When Sailendra was a child, he used to watch his father treat the wounds of people who lived in the leprosy colonies. This inspired him to give back to the community that cared for him so much. In 2004, he gathered together a group of youngsters in the leprosy colonies and together, they decided to take matters into their own hands and improve life for families in the colonies. Collecting ₹1 per family each day in 20 colonies, the group of youngsters led by Sailendra raised ₹1,50,000 in one year which immediately went toward helping families in desperate need. This sparked a feeling of self-sufficiency and hope that made Sailendra establish the leprosy NGO Atma Swabhiman 5 years later.
How Atma Swabhiman cares for people
Founded in 2009, the leprosy NGO Atma Swabhiman cares for 3,119 leprosy survivors from 1,127 families in the leprosy colonies. The organization provides:
- food rations
- emergency care
- clothes
- medical treatment for ulcers, wounds and leprosy related
- personal support (especially for senior citizens and people with disabilities)
- education material for students
- capacity building for children in leprosy colonies
- livelihood support
- self-help groups for women
- increasing access to water
- facilitating access to schemes
Atma Swabhiman means self-dignity and the name of the leprosy NGO is no accident. Sailendra would often see people begging for alms just to survive. But he wanted them to have a more dignified life. The organization provides livelihood opportunities so that the adults of the leprosy colonies can access safe and decent employment to be able to provide for their families. For the children, Atma Swabhiman offers education and capacity-building so that the children have a solid academic foundation on which to be integrated into mainstream education.
Support Atma Swabhiman
Atma Swabhiman currently takes care of more than 3,000 leprosy patients who have no other means to access the medicine that will make them well. By supporting one of the most forgotten and marginalized groups of people in India, you can help people recover from this curable disease and empower the next generation of people living in leprosy colonies. To support Atma Swabhiman, you can donate here:
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Shirley has been in the development sector for over 10 years and is passionate about making a change in the world around her, including adopting dogs and writing to make a difference.
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