New Face of Leprosy
Sultana Begum
Staffel | Nr. | Veröffentlicht | Titel | Beschreibung | ||
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1 | 1 | 27.11.2024 | Sultana Begum |
"I am Sultana Begum. I’m 34, and I live with my husband, Sharif, 44, our two sons, 14 and 16, and our daughter, 12. All of our children are in school, and I was educated until class 7.
My husband used to sell kerosene, which he has done all his life. But 3 months ago, the government changed the law about individuals selling it, and he has had no work since. Our daughter is at the top of her class, but we’re running out of money, and my husband is saying we may have to take her out of school… it’s been distressing me a lot.
I got leprosy 11 years ago, sometime after my daughter was born. My hands started to claw and became anaesthetic, as did my feet. I started visiting private hospitals. For 8 years, we went to various places with no correct diagnosis. We spent a lot of money, between 3-4 lakh.
I had so many tests and took so much medicine. My father-in-law was saying we shouldn’t be spending this much, and even encouraged my husband to divorce me. They tried to manipulate him. I used to cry a lot. At one point, I felt it would be better if I just died.
Eventually, in 2016, I took my daughter to the hospital as she had a fever, and the doctor saw my feet and referred me to another doctor, who then sent me to the Nallakunta Leprosy Referral Centre. They put me on treatment, which I completed in July 2017.
When I was first diagnosed, I was actually happy that they knew what it was and that it was curable. They reassured me and said everything would be fine. They taught me self-care, and I’ve been very careful since. I even only drink tea from cups so I don’t hold a hot glass. I still have a slight ulcer and visit the centre every two weeks. Only my husband knows that I have leprosy.
My husband was an alcoholic, and things weren’t good at home. His brothers weren’t willing to help him at all, so two years ago, while I was still taking MDT, I sold my gold necklace so I could pay for a liver operation for him. I’d arranged for a doctor to speak to our children so we could have an intervention. Now he doesn’t have this job, I’m really worried about my daughter’s education. She really loves school and wants to continue her studies. I’m even willing to find a job myself.
My husband is reluctant to find other work. He’s only ever known how to do one thing, and he can’t do that anymore. He said it’s enough that he can provide food. I get a government disability pension of 3000 INR. That’s all we live off. I’ve been getting it for 5 months. We used to have 1-2 lakh saving, but it’s almost gone now.
He’s never physically abused me, but he has verbally. He’s told me to get money from my parents. I don’t want my children’s lives or studies to be affected, so I didn’t tell them I have leprosy. My husband’s brothers haven’t been supportive at all. I have four brothers and two sisters. One of my sisters stays locally. When my husband used to drink, he would argue with my sister’s husband. Now my sister’s not allowed to visit here.
What would I say to someone just diagnosed with leprosy? Earlier, I used to feel like dying, but once I visited NLRC, I was treated. So don’t worry; if you visit, you’ll be treated and can lead a normal life."