Shanti and Shristi’s story
“When blisters started to develop on my face and body, I began feeling anxious around my friends,” says Shanti.
Living in one of the quiet villages near the Indian border of Nepal, misconceptions about leprosy abounded in their community.
Shanti felt the weight of leprosy’s stigma almost as soon as she contracted it. The once vibrant girl withdrew from social interactions, no longer wanting to leave her house or see her neighbours and classmates.
Fortunately, Shanti’s condition did not go unnoticed.
“A local health worker noticed that my blisters kept getting worse, so my dad took me to the local health post,” Shanti says.
“The doctor at the local health post checked my skin. He told me that my symptoms were caused by leprosy,” Shanti says.
Shanti’s leprosy diagnosis initially worried her. Her sister Shristi had also been diagnosed with leprosy, and her health journey didn’t provide Shanti with much hope.
“Before her leprosy developed, Shristi used to work long days in the tea fields to support our big family,” Shanti explains.
“At that time, my mom tried to help my sister get medications for her leprosy, but no one gave us MDT,” she says, referring to Multi-Drug Therapy – the life-changing treatment that cures leprosy.
Shristi began feeling weak due to the lack of oxygen in her blood as a result of her anaemia. Soon after their father died, Shristi’s poor health caused her to drop out of school and then stop working.
“When my sister stopped working due to her leprosy, my mom found it hard to provide for our family. We were on the brink of poverty,” Shanti recounts.
But when the girls’ mother joined a local self-help group, everything changed.
“The leprosy focal person taught us how to care for our wounds and ulcers, and they made sure we took our medications. They told my sister and I that if we take a full 12-month course of MDT, we can be cured of leprosy,” Shanti reports.
The family also received a goat as part of their involvement in the self-help group, setting them on a path to economic empowerment.
Dinesh Mandal is the Program Officer at the Nepal Leprosy Fellowship, one of The Leprosy Mission Australia’s key partners in Nepal.
“We have recently launched Leprosy Self-Help Groups with funding from The Leprosy Mission Australia and the local government. The Self-Help Group has provided Shanti and Shristi’s family with a goat and agriculture training,” Dinesh explains.
“Shanti and Shristi’s family will continue to receive self-care training and use these skills in the future.”
This ongoing community and assistance provide much-needed support to the whole family.
“I know that my daughter’s leprosy is not a curse and that it can be cured,” says the girls’ mother. She admits, though, that she still loses sleep, worrying about caring for herself and her children.
Shanti’s once bleak outlook on life has changed completely, and she now approaches her future with hope and confidence.
“Since taking medications, my blisters have reduced, and I’m no longer scared to see my friends. I attend school every day and I want to graduate,” Shanti says, with a broad grin.
Yes, Leprosy is still a thing. But as Shanti and Shristi’s story shows, it doesn’t have to be a thing in the future. There is a cure, and with your help, we can end leprosy in our lifetime.
