Nepali Times
Life after leprosy


Chandrakala Kunwar was 12 when she started showing symptoms of leprosy infection. Neighbours in her village in Myagdi soon found out and fearing an epidemic, dragged her to the banks of the Kali Gandaki and quarantined her in a shack built with twigs and leaves, warning her never to set foot in the village again.

"I still hate them," says Chandrakala, now 20, about the villagers and relatives who ostracised her from buying at local shops, using the public tap or going to school. Finally, her father carried the girl for nearly three hours from her village to the district hospital. Eventually, she was transported to Anandaban Leprosy Hospital (ALH) in Lele outside Kathmandu. Eight years later, she has lost most of her toes but is cured. The mental scars, however, still remain. In Lele, patients recall heart-rending tales of victimhood.

"No matter where I go, whenever people see my feet, they will remind me that I am a leper," says Chandrakala. Says another patient, Maya Lama: "No matter what we do we are still treated differently."

Nepal has been successful in reducing the leprosy affected population from a prevalence rate of 21 per 10,000 in the 1980s to just 2.41 per 10,000 by 2004. In fact, the country is on the verge of declaring leprosy eradicated and in reach of the World Health Organisation (WHO) target of reducing the number of cases to one per 10,000 people.

"We are already reaching that stage where we no longer see leprosy as a major public health crisis. It is just a matter of a few years," says Bimla Ojha, director general of the government's Leprosy Control Division. But for many health personnel working closely with leprosy affected families, numbers are not so important.

"The problem of leprosy does not end with medical care because real challenges of stigma start once the patients complete their treatment," explains Pradeep Failbus, superintendent of Anandaban, the country's pioneering and best leprosy hospital. It offers free treatment and medicines supplied by the Ministry of Health.

Doctors here say curing leprosy is not the problem: it is addressing the low self-esteem and psychological trauma of exclusion once patients return to their home villages. "The worst problem is social exclusion, perhaps even more than leprosy because it will take a longer time to heal," says specialist Madan Ghimire, whose studies have shown that even the educated have strong prejudices against people who are cured but are deformed by leprosy. The situation is much worse for girls and women, who are often abandoned by male relatives and husbands.

"A wife would rather get infected by her husband than desert him," says Rewati Mahato, a 20-year-old mother of four children whose face shows signs of infection. She was abandoned by her husband who remarried and fled to India. "Life becomes a nightmare," she added. Mahato was forced by relatives and neighbours to live in isolation in a forest. She left her children with her parents and travelled over 150 km from Mahottari district to Kathmandu for treatment.

"Even after decades of mass awareness that leprosy is curable and not very contagious we still have this problem," explains Shovakar Kandel, an activist with the self-help group Integration Dignity and Economic Advancement (IDEA).

Kandel feels the media is not doing enough to educate the public and fears continued ostracisation could trigger psychological disorders in former leprosy patients.

But the government is optimistic such stigma will be eradicated as the disease itself disappears. "It's definitely not easy to reintegrate especially individuals with deformity," says Ojha. "We have to work on raising mass awareness to generate sensitivity towards their situation."

(11 JAN 2013 - 17 JAN 2013)