HYDERABAD, India – As Amina Begum stared at her hand, tears welled up in her eyes.
She is a young woman, only 19 years old, but her hand has been crippled by an ancient disease: leprosy.
There may be no other event with so many stains in history. The ancient Egyptians wrote about it; So are the Greeks. In Medieval Europe, people with leprosy were banished from their communities even though the disease, despite all odds, was actually not contagious.
Today, leprosy, also known as Hansen’s disease, is easily curable, especially when caught early, yet many of those affected feel left out.
“When I ride the bus,” Amina whispered, “I hide my hands in a shawl.”
“Even my brother,” she added, trying to wipe away tears, “makes me feel ashamed.”
But there is one place where her dignity is nurtured: Sivananda Rehabilitation Housewhich served as both a hospital and a refuge for six decades in a country that fights leprosy more than any other country.
Sivananda is located in the middle of the giant city of Hyderabad, in central India, and everything around it seems to be in a frenzy. The electric scooter passed by. A new subway train passed by, shaking the ground. The six-lane boulevard outside was crowded with commuters racing to find jobs at Apple, Google, Amazon and Uber.
But to step through the hospital’s blue mesh gate is to step into another period of time.
The first thing one notices is silence, as the hum of the boulevard disappears. Then you see the dusty frangipani trees, their fragrant buds just beginning to bloom.
Inside the hospital, on old metal cots, patients rest, some with calloused fingers, others with patches of gray skin.
In the small operating room, limbs are carefully repaired.
In the workshops behind the wards, relatives of the sick person spin yarn and weave cloth to make bandages.
Sivananda is its own closed world. It even grows its own papaya, which the staff mix up and use to treat wounds (papaya pulp contains helpful enzymes).
Many elderly patients do not want to leave. Their faces were etched with disease, their noses were flat, their ears deformed, and they refused to rejoin a society that had cruelly rejected them.
So Sivananda made a house for them. About 250 people live in a complex of miniature cement block houses, row after row of old dilapidated clothes, clothes dangling from wires and transistor radios blaring the Bollywood tunes of that year faintly. bland.
On a recent afternoon, a woman sat alone in the yard, slowly combing her long silver hair.
The hero of this place is Dr. S. Ananth Reddy, who has spent his entire working life – almost 40 years – at the hospital. He is a professional reconstructive surgeon, skilled in the delicate surgeries needed to repair people’s hands.
But he also handles pretty much everything else that needs to be done at Sivananda, which has 55 employees and gets an annual budget of less than $350,000, mostly from donations. Its treatments are free.
Dr. Reddy is like Sivananda’s heartbeat, constantly enlivening the place and keeping it alive.
He looked under a microscope for the rod-shaped mycobacterium leprae cells that caused the disease. He sources “food, medicine, and so forth,” as he puts it.
And he finds time to do what really brings him satisfaction: sit with patients in a quiet, sunny ward and place a comforting hand on his shoulder if and when needed.
As a young medical student, he gravitated toward leprosy. There was something about the beggars with the disease that he saw on the street, giving their bodies to passersby, in what used to be a much more common sight, that moved him, he said.
His parents were so embarrassed that they tried to keep his profession a secret.
But the rheumatism around him never bothered him, though his wife watched his body closely at night, checking for each new rash and bump.
“The moment you say leprosy, your mind goes awry and the pictures you’ve seen and whatever our ancestors wrote,” he said. “But that’s not it. It is a treatable, detectable and preventable disease. ”
Mycobacterium leprae is a tricky germ. It actually doesn’t cause illness in many people, which means it doesn’t make everyone sick – but it can stay in the body for 20 years before symptoms appear. This disease attacks the nerves and can lead to paralysis of the limbs, even blindness.
It is spread by close contact, especially nasal droplets, and doctors and nurses at leprosy hospitals have contracted the disease, although such cases are rare.
“I can understand,” said Dr. Reddy. “But I was never worried. If God wants me to have leprosy, let him give it to me.”
What worries Dr. Reddy as he contemplates retirement – he is 69 – is the unrelenting demand for his services.
The World Health Organization is working to eliminate this disease, and many countries don’t have any new cases.
But India still records more than half of the 200,000 new cases in the world every year. Health experts attribute this to India’s size, population density and poverty, which has left many people crammed with poor ventilation and sanitation.
New leprosy patients continued to walk through Dr. Reddy’s door. And they are getting younger and younger, just like Amina.
One reason: Because the disease is now easily treatable, health professionals have stopped routine screening, which allows leprosy to continue to spread.
“When I was younger, we did house-to-house surveys,” says Dr. Reddy.
Identifying an infection early can mean the difference between a deformity or not, and detection is easy – if you know what you’re looking for. Simply touching a suspicious patch of gray skin with a ballpoint pen can be the first step: If the patient feels nothing, leprosy is likely.
Unfortunately, in Amina’s case, the first doctors never did this, a sign of complacency about the disease, Dr. Reddy said. Doctors first dismissed the gray patches 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, bacteria entered her finger nerves, leading to a condition known as clawed hand.
Last year, Dr. Reddy operated on her. He lifted the tendon from a finger to restore motion in her left hand and performed a skin graft from her forearm to cover up the excess skin needed for her new range of motion.
If she’s properly diagnosed, she’ll be on a multi-drug regimen, which Novartis pharmaceutical company provides for freeand that might have captured the leprosy bacteria before it got into her fingers.
Many long-term residents of Sivananda contracted the disease many years ago, before these drugs became widely available.
One man, Babli, has lived in a concrete cabin behind the medical wards for 35 years. His nose and hands showed signs of leprosy.
While the rights of people with disabilities have go a long way in indiaand the government giving a small percentage of jobs to people with disabilities, including leprosy, discrimination still hurts.
“They won’t even let us have tea out there,” said Babli, nodding toward what lay beyond Sivananda’s walls. “They told us: ‘Go, go far far.'”
But not everyone wants to stay. Amina, a person with a warm and open personality, despite the hardships she has endured, she is determined to complete her physical therapy and earn a living outside. That’s why Dr. Reddy and Sivananda are so important to her.
She has a simple dream and to achieve it she will need her hand.
“Do you know what I really want?” she said, allowing a smile to appear on her face. “I want to be a tailor.”
Suhasini Raj contributed reporting.
https://www.nytimes.com/2022/01/25/world/asia/india-leprosy-treatment-sivananda.html Leprosy Hospital provides healing, and a Haven, to the shunned