Ajay’s story: Leprosy’s impact on families

January 21, 2019

Meet Ajay, aged 40, from Amroha, India. This is his story, told in his own words, to help raise awareness of stigma and discrimination this World Leprosy Day.

“When I was only fifteen years old, leprosy changed my life. I discovered a strange spot on my skin. I thought it would disappear with time. But it only got worse. Then I also lost the feeling in my hands and feet. My family and the other villagers kept me at a distance. They would keep staring at my deformed hands and feet. They were afraid they would become affected with leprosy as well. My mother was the only one who didn’t mind touching me and caring for me.

But then, suddenly, my mother died. I didn’t know what to do without her. Everyone else loathed my presence; there was not a soul willing to help me. I felt so helpless and lonely that I decided to leave my village. Afraid of all that I had to face.

It was only then that I went to see a doctor. He told me I had leprosy. He gave me medicines and treated the many wounds and ulcers I had contracted. ‘You will find a leprosy colony in Amroha’, he told me. ‘You can live there.’ And so I did. Where else could I go?

My wife, son, and I live an isolated life here, together with about thirty other families. I barely have the money to provide for my family. Every day I try to get a few rupees begging. I don’t have a choice. Nobody wants to employ me because of my deformities. My greatest worry is the future of my thirteen-year-old son Shivkumar. He doesn’t have leprosy, but he’s discriminated all the same. There is a chance he’ll never get married. People don’t want the child of a person affected by leprosy. They simply won’t accept a marriage like that.

It’s my dream that my son will never be forced to beg, and will be able to build a better life outside the leprosy colony. I don’t want him to go through the same misery I have gone through. He should not become the victim of my leprosy. I want him to pursue an education, as it gives him a better outlook for the future, but sadly that’s out of my hands.”

ILEP member, the Netherlands Leprosy Relief (NLR), report that Ajay has now received training in self-care and his son Shivkumar will undergo vocational training.

Click here for a short video from NLR about Ajay.