Defying Stigma and Discrimination: Being Affected by Leprosy Brings More Challenges Than Just the Disease

World Leprosy Day was on January 26th.

Amar Bahadur Timulsina was diagnosed with leprosy at 12 years old. Being from a remote village in Nepal where treatment for the disease was unavailable, he traveled on foot with his father to reach medical help, walking two days to reach Kathmandu. They went from one hospital to another but didn’t receive the treatment he needed until he reached Anandaban Leprosy Hospital. There he was diagnosed and finally received the treatment he needed.

Personally facing exclusion and discrimination has shaped Amar into a leader for change in Nepal, fighting for the inclusion and empowerment of persons affected by leprosy. Photo credit: Andie Tucker for GPZL.

Timulsina returned to his village after completing his treatment but found that he was no longer welcomed by his community. News of his diagnosis had spread, and the environment was so hostile that he was forced to leave. He returned to Kathmandu and was taken in by an orphanage upon the recommendation of his doctors from the hospital. 

There he was able to continue his studies, but because of the stigma he faced in his community, he was separated from his family and his home. “I was afflicted by two pains: I suffered physically as well as mentally,” said Timulsina.

After completing his studies, Timulsina’s father arranged a marriage between him and a woman from another village. He did not reveal that he’d been diagnosed with leprosy because, “I’d already been cured and there was no need to explain that I’d suffered from leprosy time and time again.”

He wished to leave the stigma of the disease behind at the start of his marriage, but his wife, after learning about his medical history, filed for divorce against his wishes. “I was forced to sign divorce papers though it was not my will,” said Timulsina. This kind of discrimination against persons affected by leprosy is still legal in Nepal, although national leprosy organizations are working to fight it.

The Global Partnership for Zero Leprosy, a program of The Task Force for Global Health, is a coalition of groups committed to ending leprosy. Persons affected by leprosy play a key role in the Partnership, offering invaluable perspective and guidance that shapes the work of the partnership, through the involvement of the International Association for Integration, Dignity and Economic Advancement (IDEA) and the participation of representatives from the global community of persons affected by leprosy on our Leadership Team. One of these representatives is Timulsina.

Timulsina helps lead the fight against legal discrimination through IDEA Nepal. IDEA Nepal is “a common platform for all the people affected by leprosy” that is “working to restore the lost smiles on the faces of people affected by leprosy.” Timulsina’s work with IDEA Nepal is changing the story of persons affected by leprosy in the country from one of social stigma, isolation, and legal discrimination, to a story of inclusion, representation, and hope. His personal story illustrates the need to keep fighting stigma and discrimination and the irreplaceable value of persons affected in leading that fight.

Photo caption: Amar Bahadur Timulsina receives an award from IDEA on behalf of persons affected by leprosy in Nepal. Photo courtesy: International Federations of Anti-Leprosy Associations (ILEP)

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