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Plight of leprosy sufferers no better than in Gandhi's day

Time spent volunteering at a remote ashram in India has enabled The National's Teen Life columnist, Lavanya Malhotra, to follow in the footsteps of her late grandfather. The ashram is home to leprosy sufferers and their families.

Women show their bandaged feet at the Chandi Kusht Ashram, a shelter for lepers in Chandigarh, India. Lavanya Malhotra for The National
Women show their bandaged feet at the Chandi Kusht Ashram, a shelter for lepers in Chandigarh, India. Lavanya Malhotra for The National

This summer, I had the opportunity to visit the Chandi Kusht Ashram, a shelter for lepers, located in Chandigarh, a lush green city designed by the French architect Le Corbusier. It's hundreds of miles north of Secunderabad, in the Indian state of Andhra Pradesh.

There, I met a woman who, 40 years ago, was a young newlywed with dreams of raising a family. Her married bliss did not last long. Just a few months after she married, her husband fell prey to leprosy.

Health care in rural India then was still in its infancy. The disease that is easily curable now then condemned the sufferer to either death or a life hardly worth living. This woman's eyes moistened as she recounted how her husband passed away as a frail shadow of his former self, leaving her penniless and widowed. She hoped that her neighbours and family would help her rebuild her shattered world, but that was out of the question. She, too, had fallen victim to the illness.

While leprosy is not highly contagious, it can be transmitted through droplets from the nose and mouth during close, frequent contact, so it is often passed on to family members. The guilty micro-organism, Mycobacterium leprae, can hide out in the body for a long time - up to five years - before manifesting itself, so it is difficult to pinpoint the time of infection. Usually, lesions on the skin, muscle weakness, numbness and disfigurement follow, though leprosy can easily be diagnosed with a skin scraping examination or a biopsy.

The woman's village was a harsh place for a young leper; she was avoided by people, taunted and eventually driven out of the only home she had ever known. For years, she roughed it out. Having lost sensation in her hands, she begged for alms and slept under a tree or a bush to protect herself from the elements. Not a single stranger made the effort to relieve her of her plight, until, having travelled the hundreds of kilometres north, she arrived at the ashram. When she tentatively asked for help at its doorstep, she was welcomed with open arms. It has been, she told me with a wide smile, home sweet home ever since.

For the past three years, summer for me has been marked by helping out at a charity clinic run by my grandfather, an extraordinarily selfless general practitioner. He passed away early this year; the void left will be impossible to fill. The two-month-long summer holidays felt especially dreary when I visited my grandma's house in Chandigarh. Answering the doorbell meant having to turn away villagers who had travelled for kilometres hoping for free, high-quality medical service from "Doctor Sahib".

That was when I began to look for opportunities in the city to do charity or volunteer work and stumbled upon the leprosy shelter, whose inhabitants stress that the best way we can help is by contributing towards its funding or food requirements. While built by the Rotary Club on land gifted by the government, the ashram functions entirely on donations and is run by a trust. I had some money saved up and I perked up when a laughing group of ladies shyly admitted that people often brought in staples such as rice or flour for them, but they wished they could have a treat every now and then, too. Paneer, or cottage cheese, which is often cooked as part of a tomato-based dish in Northern India, would be much appreciated. The children pleaded for biscuits, a delicacy they had sternly been told they could not afford.

That was easy enough. Three times a week, I would bring in packets of cottage cheese, fruit, biscuits and other food, distributing them among the families and talking to them. I was impressed by how they conducted themselves as they gathered around to collect the supplies, with such honesty and dignity. Despite having so little, an elderly man refused to accept a second packet of biscuits, pointing out a little girl whom I had missed among the crowd. A lady assured me that I had already given one to her husband, which would be enough for the family. It was humbling to experience their gratitude for the smallest gift.

The 40 families who occupy the 40 rooms available form a close-knit community. Teamwork is all important: any money collected ends up in a common pool and is used to buy food, clothes and books for the schoolchildren.

A vigorous enjoyment of life is what struck me immediately: brightly clad women in sparkly bangles chatted animatedly as they stirred their cooking pots and laid out lentil seeds to dry in the sun. Pretty henna patterns were painted on hands that sometimes lacked fingers. Doting grandfathers laughed as children played cricket with bats fashioned out of planks of wood. A sense of pride was evident in the colourful birds and flowers painted around the doorways of houses and on the immaculately kept temple at the entrance. As I paused to admire an intricately bordered doorway, a baby came crawling out to say hello. He gurgled as his grandma called after him, while his mother bustled about her daily chores. As I stopped to speak to the family, I realised that the grandma had no toes, but from her authoritative voice and love for her grandson, you felt there was nothing amiss. While the able-bodied here are employed or take care of domestic affairs, I was touched by how everyone does their best to take care of each other's needs. Those with long-term leprosy have suffered permanent nerve damage, losing limbs or digits due to a loss of sensation in those areas. Mottled arms and the large nodules characteristic of the "lepromatous" form of the disease are stark reminders of the scars leprosy leaves, but bandages are always clean, wounds sterilised and dressed. Antibiotic regimes are diligently followed. It is high time society realises that there is no need for leprosy sufferers to be shunned. The multidrug treatment, comprising dapsone, rifampicin and clofazimine, is freely available and completely kills the culprit bacteria. This renders leprosy non- contagious after the initial rounds of medication.

Currently, the ashram is having trouble accommodating new people and plans are underway for the construction of more rooms. Lepers on medication live here, of course, but so do their families and those who have been cured. Although awareness is growing among the open-minded Indian youth, the social stigma of being disfigured still remains. The anniversary of Mahatma Gandhi's death, on January 30, also marks Anti-Leprosy Day in honour of his work to integrate lepers into society. Health care today is affordable and of a high quality. Yet acceptance is slow to come in a country that idolises Gandhi but is loath to denounce traditional beliefs.

Another woman, a mum to four, told me that she has just one wish. "I don't want people to judge me because I use a wheelchair or had a disease that was not my fault. I want them to think of me as the brave mother of beautiful, successful girls and boys who make me proud."

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