New Face of Leprosy

Sarada is 32. She lives with her husband, a pastor, and their two children. “My 18-year-old daughter stopped school in 7th class as she didn’t want to go anymore, so she helps me at home. My 16-year-old son is in class 9. I’d like him to get a good education and not just have small jobs.”

“I work 3 hours a day as a maidservant in another household. Otherwise, I am looking after the home only. Sorry if it’s busy today, it’s my cousin’s daughter’s wedding so there are lots of people around. 8 months ago, I got a small patch on my cheek. I went to 5 or 6 private practitioners in a large hospital, but there was no improvement. In total we spent perhaps 12,000 INR on consultations and medicine.”

“Then 2 months ago I went to a PHC here in Filmnagar – and the doctor suspected it was this disease and referred me to LEPRA (NLRC).”

“I was really afraid. I thought, how could I have this?? My relatives don’t have it. I didn’t really know much about it before, but I thought of it as an untouchable disease, and I cried all night before going to LEPRA. I didn’t sleep at all. The doctor had told me there was no need to be afraid, and that it was treatable, but still I worried. I was waiting outside the clinic before it even opened at 9.15.”

“There at LEPRA, they gave me courage, and I learned many things about the disease. I was put on medication and the swelling, pain and redness reduced very quickly. My appetite had gone for the previous 6 months too, but that’s back to normal now too. My husband has also been very supportive and comes with me to the centre. However I’ve not told my children, and I don’t want anyone else in my family to know about this. If they find out, they may treat me different… keep their distance. Once that happened with a relative in my family who got TB – everyone kept their distance and treated them differently. I don’t even want them to find out after treatment is completed.”

“I’m currently on month 2 of 12 of the treatment (due to enlarged nerves, but she should only be on 6 months as smear test was negative). I missed one week by accident as a relative was very unwell and it slipped my mind. No one has asked too much about what the medicine is for – I have very bad acne, so they just think it’s related to that.”

“There is a notion that people with leprosy are isolated and told it is not curable, but I’d tell them to be brave as there is advanced medication and health education these days, so they need not worry if proper medication is taken.”