Jocelyn's Story

South Sudan

I'm glad that my children have a better life than I had.

Jocelyn Apu is a happy woman in her 50s who smiles a lot during conversation. Since the age of six she has lived in Luri Rokwe, a ‘leprosy village’ where many of the residents are living with serious consequences of the disease. The village was initially built away from the city so that people who lived there would be isolated from others, though now it can be easily reached by road.

When Jocelyn began to have swelling of the hands and ulcers on her fingers, her parents surmised that it was leprosy. There was a fear that, if she stayed at home, she would infect her four brothers and sister. So her father brought her to Luri Rokwe, where she could be looked after. He had to go back to the family, who lived in Gemesa, around 40km away. They came to visit sometimes, but it was lonely.

In Luri Rokwe, Jocelyn received basic leprosy treatment but was not taught anything about how to care for her hands and feet, which had lost sensation due to leprosy. She got severe injuries to her hands, and most of her fingers became severely deformed. Years passed. She married a man who himself came from a leprosy-affected family: both his parents had the disease. They have had nine children but only four of them have survived.  Jocelyn lives with her family of six in a simple, one-room house. Around the house there is the potential to grow some beans and other vegetables: some can be sold in the market and the income used to buy flour and other essentials. One of the children's uncles provides money for school fees – otherwise it would have probably been impossible to arrange schooling for the children.

Jocelyn says: "I'm glad that my children have a better life than I had. They are healthy and are studying in school. But yes, I wish we could have more room in our house. And I also want a better position to provide the family with food. The times we have food, we eat three times a day, sometimes two times a day. But there are times when we have nothing to eat. Now it is the dry season, the most difficult time. We grow, but nothing grows when it's not raining." She adds, seriously: "I hope The Leprosy Mission has energy and resources to help me and my family."