(formerly IRIN News) Journalism from the heart of crises

Living with leprosy

[Nepal] Leprosy affected girls and women are more ostracised than their male counterparts.
IRIN

As a twelve-year-old girl, Chandrakala Kunwar had to endure social ostracism after contracting leprosy. When her neighbors in the Magdi district, nearly 300 km northwest of the capital, Kathmandu, discovered she had the disfiguring disease, they literally dragged her to the riverside and quarantined her in a shack built with twigs and leaves and warned her never to set foot in the village again.

“I hate them so much,” explained Kunwar, as she recounted her story to IRIN, recalling how fellow villagers and even relatives prevented the young girl from going to the shop, drinking from the public tap or attending school. Ultimately, her father carried his daughter for hours to the district hospital in Magdi, in search of treatment.

Eventually, she found her way to Anandaban Leprosy Hospital (ALH), established in an isolated Tikabhairab, 16 km south of the capital. Now after almost eight years, 20-year old Kunwar has been totally cured of leprosy but she has already lost most of her toes because of severe infection.

“No matter where I go, whenever people see my feet, they will never stop reminding me that I had leprosy,” Kunwar said.

LEPROSY ON THE DECLINE

Nepal has succeeded in reducing the incidence of leprosy from a prevalence rate of 21 per 10,000 population in the 1980s to just 2.41 in 2004. The government is on the verge of declaring leprosy beaten as it is close to reaching the World Health Organisation (WHO) target of reducing the prevalence rate to just 1 per 10,000.

“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,” Bimla Ojha, director general of the government’s Leprosy Control Division (LCD), told IRIN.

But the arithmetic doesn’t really matter to many health personnel working closely with leprosy-affected families. Every person who has suffered from the disease faces further problems.

“The leprosy problem does not end with medical care because the real challenges start after the patients leave the hospital,” Pradeep Failbus, ALH’s superintendent, told IRIN.

ALH is one of country’s pioneering leprosy hospitals and provides free treatment and medicines through the Ministry of Health.

THE REAL CHALLENGE BEGINS AFTER TREATMENT

The health facility has observed the insecurity and low morale among affected patients, especially after they have to leave hospital, often badly disfigured and have to face society.

“The worst case is social exclusion for them and perhaps that is the disease that will take a long time to cure,” noted leprosy specialist, Madan Ghimire, told IRIN. Ghimire has conducted research on social stigmatisation of former leprosy patients and concludes that even educated people have strong prejudices against the leprosy-affected.

The situation is much worse for girls and women. They are frequently abandoned by their husbands and male relatives when deformities develop, often caused by a delay in receiving the appropriate leprosy treatment.

[Nepal] Rewati Mahato, a 20-year old mother of four children, was abandoned by her husband.

IRIN
[Nepal] Rewati Mahato, a 20-year old mother of four children, was abandoned by her husband...
http://www.irinnews.org/
Thursday, May 26, 2005
[Nepal] Rewati Mahato, a 20-year old mother of four children, was abandoned by her husband...
Rewati Mahato, a 20-year old mother of four children, was abandoned by her husband

“A wife would rather get infected by her husband than desert him,” explained Rewati Mahato, a 20-year-old leper and mother of four children, who was abandoned by her husband who fled to India to remarry.

“It’s a sad fate for those affected with leprosy. Life becomes a nightmare once you have it,” added Mahato, whose pretty now face show signs of disfiguring growths common in those with advanced forms of the disease. She was forced by her relatives and neighbours to live in isolation in a forest. She left her children with her parents and travelled over 150 km south from Mahottari district to Kathmandu for treatment.

SOCIAL STIGMA

“Social exclusion is the worst crisis that leprosy patients face even after decades of mass awareness that leprosy is curable and not really contagious,” explained Shovakar Kandel, an activist from the leprosy self-help group Integration Dignity and Economic Advancement (IDEA).

IDEA is an international organisation of people living with leprosy or the legacy of leprosy, who help each other with economic assistance, training and social empowerment. In Nepal, the group is actively involved in income generation activities and advocates equal social status of those affected by leprosy.

“If proper rehabilitation programmes are not introduced, it is likely that new leprosy patients will try and conceal their condition and not go for treatment,” Kandel told IRIN.

The government is optimistic that social stigma will be reduced as the number of leprosy patients with deformities decreases.

“We have to all work on raising mass awareness, especially to generate sensitivity towards those with leprosy,” explained Ojha.

One of the main problems is that only a handful of NGOs are working on leprosy issues and the lobby for human rights for the leprosy-affected population is weak.

“We are all cornered about the isolation from the rest of society. Perhaps it’s really a curse we have to live with all our lives,” 45-year-old leprosy sufferer, Maya Lama, whose feet have been terribly deformed by the disease, told IRIN.

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