ANCIENT DISEASE STILL RIFE

Nepalese doctor offers hope to leprosy sufferers

by Jon Burbank

PASHUPATI, Nepal — In 1980, when Hari Maya Kuinkel was 20 and pregnant for the third time in her arranged marriage, the shaman of her village in eastern Nepal diagnosed the tingling in her feet as possession by “new” spirits. It wasn’t. By the time leprosy patches appeared on her face her alcoholic husband had already disappeared.

Her village forbade her from taking water from the village well. Neighbors forbade their children from playing with hers. Unscrupulous men extorted first Hari Maya’s land, then her house.

She fled to her in-laws, who allowed her to stay in the barn, but forced her to wander and beg for food. Finally, to get medical help, she boarded a bus with her children for Katmandu, wrapping herself in shawls to hide her condition.

It may be startling, but leprosy remains a major problem in a number of counties around the world, from Brazil to Indonesia. Nepal has one of the highest leprosy rates in the world.

Leprosy robs victims of their fingers, toes and facial features, but in Nepal it also steals their family, their job, their rights and their whole social identity.

Leprosy probably originated in the Indian subcontinent. Indian documents dated 600 B.C. contain confirmed descriptions of the disease. Lepers were stigmatized later as cursed before God.

As ancient as leprosy is, we still have much to learn about it. How it infects, for one thing. Current thinking is it enters through the respiratory track, although infection through open cuts isn’t definitively ruled out. Leprosy bacteria are rare in that they prefer cool places: the skin, nerves near the skin, and the surface membranes of the mouth and nose. (Most bacteria prefer warmth.) Skin lesions and tender joints are two early signs of the disease. Over 95 percent of us can successfully fight off infection with our own immune system.

Sewa Kendra, a small nongovernmental organization at Pashupathinath Temple in the town of Pashupathinath in the Katmandu Valley, treats both the physical and social wounds this horrible malady inflicts. Dr. Hira Mana Pradhan founded Sewa Kendra in 1989 after working 15 years in the Nepalese government’s leprosy hospital in Katmandu. It has a greater impact than its modest appearance suggests.

Pashupathinath is a fitting location for Sewa Kendra and Pradhan’s mission. Nestled on the wooded banks of the Bagmati River, this is Nepal’s holiest Hindu site. Lord Shiva, the most popular god in the Hindu pantheon, claims Pashupathinath as his own.

Every day thousands come to worship, bathe and even die here. Beggars line the shady road sloping down to the temple, soliciting donations from generous pilgrims. Among the mendicants, charlatans, street kids and homeless are more than a few lepers, many of whom are elderly suffers abandoned by their families and begging as they simply wait to die.

These were the people Pradhan first targeted for help when she arrived to set up Sewa Kendra.

A resident of the home, Nara Bahadur Tamang was typical of the eldery sufferers. Now in his 70s, he’d suffered leprosy from his mid-20s. Deformed and covered with sores, he’d sunk into alcoholism, surviving on whatever he could beg. As his fingers withered away, so did any sense of his life’s worth. He lost faith in mankind and its institutions.

Initially seven people stayed at Sewa Kendra’s modest three-story building. Now about 30 consider it their home.

Hari Maya came here in 1989. Multidrug therapy (dapsone, rifampin and ciofazimine), provided free by the World Health Organization, cured her of leprosy. She learned to read and write. She divorced and remarried, this time for love, with a fellow resident. In 1997 she became housemother of Sewa Kendra, with a good salary and responsibility for supervising the women’s care.

Pradhan explains the unexpected direction Sewa Kendra has taken.

“A young man I treated, Khul Bahadur Adhikari, knew how to weave and sew shoulder bags. I had him show me how, we got some help to buy looms and machines, and he started training others.”

Out of those efforts grew the handicraft job-training center New Saddles. Now employing about 100, it exports not just shoulder bags, but carpets, pashmina shawls, batik and traditional Nepalese woven cotton called dhaka.

Just as important, it helps leprosy suffers find a place to live, helps get their children in schools, and provides a social support group.

Pradhan had a stressful introduction to leprosy treatment at the government hospital. “My first day I was totally overwhelmed. There was only one old doctor and a few staff. It was terribly overcrowded, dark, filthy, the smell, the patients were depressed, no medicine, horrible deformities . . . At home that night I cried and cried.

“I told the old doctor, ‘I can’t do it.’ But he said, ‘No, you can’t say no here.’ He refused to let me go. And so I cried every day, but I stayed.” Pradhan smiles, throws up her hands, then goes out to see a waiting resident.