Leprosy is not the end. This Hyderabad hospital shows why

HYDERABAD: When Amina Begum stares at her hands, tears drop from her eyes.She’s a young woman, barely 19, but her hands have been curled by an ancient disease: leprosy.There may be no other affliction that has carried so much of a stigma across history. The ancient Egyptians wrote about it; so did the Greeks. In medieval Europe, people with leprosy were banished from their communities even though the disease, despite all the hysteria, is actually not that contagious. medium89132855Nowadays, leprosy, also known as Hansen’s disease, is easily cured, especially when detected early, but still, many of those who have it feel like outcasts.“When I ride the bus,” Amina said in a whisper, “I hide my hands in my shawl.”“Even my own brother,” she added, trying to wipe away the tears, “makes me feel ashamed.”But there’s one place where her dignity is replenished: the Sivananda Rehabilitation Home, which has served as both hospital and refuge for six decades in a country that struggles with leprosy more than any other. medium89132887Sivananda sits in the middle of the giant city of Hyderabad, in central India, and everything around it seems in frenetic motion. Electric scooters whiz past. A new metro train thunders by, shaking the ground. The six-lane boulevard outside is thronged with commuters racing off to jobs at Apple, Google, Amazon and Uber.But to walk through the hospital’s blue latticed gates is to step into another time.The first thing one notices is the hush, as the noise of the boulevard fades away. Then you see the dusty frangipani trees, their fragrant buds just starting to open. medium89132909Inside the hospital, on old metal cots, patients rest, some with stubby fingers, others with gray skin patches.In the small operating theater, hands and feet are carefully repaired.In the workshops behind the wards, relatives of the sick spin the yarn and weave the cloth used to make bandages.Sivananda is its own self-contained world. It even grows its own papayas, which the staff members mush up and use to treat wounds (papaya pulp contains helpful enzymes).Many older patients don’t want to leave. Their faces have been carved by the disease, noses flattened, ears misshapen, and they refuse to rejoin a society that has cruelly rejected them.So Sivananda has made a home for them. Around 250 live in a colony of miniature cement block houses, row after worn-out row of them, clothes dangling on the lines and transistor radios faintly playing yesteryear’s Bollywood tunes. medium89133051On a recent afternoon, one woman sat alone in a courtyard, slowly combing out her long silver hair.The hero of this place is Dr S Ananth Reddy, who has spent his entire working life — nearly 40 years — at the hospital. He is an expert reconstructive surgeon, skilled in the delicate surgeries required to repair people’s hands.But he also handles pretty much whatever else needs to be done at Sivananda, which has a staff of 55 and gets by on an annual budget of less than $350,000, mostly from donations. Its treatments are free.Untitled Carousel 85060657Dr Reddy is like Sivananda’s heartbeat, constantly animating the place and keeping it alive.He squints into microscopes looking for the rod-shaped mycobacterium leprae cells that drive this disease. He sources “food, medicines, et cetera, et cetera,” as he puts it.And he finds time to do what really brings him gratification: sitting with patients in the quiet, sunlit wards and resting a comforting hand on a shoulder if and when as needed.As a young medical student, he gravitated toward leprosy. There was something about the beggars with the disease he saw on the road, he said, presenting their bodies to passers-by, which used to be a much more common sight, that moved him.His parents were so embarrassed they tried to keep his specialty a secret.But being around leprosy never bothered him, though his wife eyed his body closely at night, inspecting each new rash and bump. medium89133101“The moment you say leper, your mind goes to deformities and the photos you’ve seen and whatever our ancestors have written,” he said. “But it’s not that. It’s an easily curable, detectable, stoppable disease.”Mycobacterium leprae is a tricky germ. It’s actually not that pathogenic in many people, meaning it doesn’t make everyone sick — but it can linger in the body for 20 years before symptoms show. The disease strikes the nerves and can lead to paralysis in the hands and feet and even blindness.It’s spread by close contact, especially nasal droplets, and doctors and nurses in leprosy hospitals have contracted it, though such cases are rare.“I may get it,” Dr Reddy said. “But I never worry. If God wants to give me leprosy, let him give me.”What troubles Dr Reddy as he contemplates retirement — he’s pushing 69 — is the unrelenting demand for his services. medium89133118The World Health Organization is striving to eliminate the disease, and many countries don’t have any new cases.But India keeps recording more than half the world’s 2,00,000 new cases each year. Health experts say this is because of India’s size, its population density and its poverty, which leaves many people crammed together with bad ventilation and sanitation.New leprosy patients keep walking through Dr Reddy’s doors. And they are getting younger, like Amina.One reason: Because the disease can now be easily treated, health professionals stopped routine screening, which in turn allowed leprosy to continue spreading.“When I was young, we did house-to-house surveys,” Dr Reddy said. medium89133038Identifying an infection early can mean the difference between deformities or not, and detection is easy — if you know what you’re looking for. Simply touching a suspicious gray patch of skin with a ballpoint pen can be the first step: If a patient feels no sensation that might mean leprosy.Unfortunately, in Amina’s case, the first doctors never did this, a sign of the wider complacency about the disease, Dr Reddy said. The first doctors dismissed the patches of gray skin around Amina’s waist as a rash, sending her home with some ointment.But Amina couldn’t feel anything in those patches. Over the next few years the bacteria invaded her fingers’ nerves, leading to the condition known as clawed hands. medium89133015Last year, Dr Reddy operated on her. He lifted a tendon from one finger to restore movement in her left hand and performed a skin graft from her forearm to cover the extra skin needed for her new range of motion.Had she been diagnosed properly, she would have been given a course of multidrug therapy, which the pharmaceutical company Novartis provides free, and that would have arrested the leprosy bacteria before it infiltrated her fingers.Many of Sivananda’s long-term residents got sick years ago, before these drugs were widely available.One man, Babli, has been living in a concrete cabin behind the medical wards for 35 years. His nose and hands bear leprosy’s signature. medium89132991While disability rights have come a long way in India, and the government reserves a small percentage of jobs for people with disabilities, including leprosy, there is still stinging discrimination.“They won’t even give us tea out there,” Babli said, jerking his head toward what lies beyond Sivananda’s walls. “They tell us: ‘Go away, go far away.’”But not everyone wants to stay. Amina, who has a warm and open personality despite the hardships she has endured, is determined to finish her physical therapy and make a life outside. That’s why Dr Reddy and Sivananda are so important to her.She has a simple dream and for it she will need her hands.“Do you know what I really want?” she said, allowing a smile to creep across her face. “I want to be a tailor.”Suhasini Raj contributed reporting.