Indramani is 51 with 4 children. She developed leprosy as a child. Her parents took her to many doctors but none made the diagnosis. When she was 17 she had an ulcer on her foot. She then came to the health centre and leprosy was diagnosed. She started on treatment. She was married aged 25. She had surgery to remove her toe. She has pain when walking. She feels that the tea garden management did not help leprosy patients properly.
Her family stood beside her and helped her be mentally strong. She is proud of them. Her biggest challenge is her pain and ulcers.
03/04/2023
Photography by Tom Bradley, writing by Prof Diana Lockwood
For over 30 years now, Muneer has been a professional tabla player, like his father, grandfather and even great grandfathers.
Near the start of his career, while playing in Kolkata, Muneer developed pain and weakness in his hands. He visited a doctor there who recognised the symptoms of leprosy and started him on medication straight away. Muneer did not see improvement in his hands after a few months and so decided to stop taking the multi drug therapy. This was a particularly upsetting time for him. He avoided getting married until he was 42 and his wife still does not know he has had leprosy.
When he left Kolkata, Muneer decided to resume treatment for his leprosy. He visited the Dhoolpet Referral Centre and the Blue Peter Public Health and Research Centre. He began taking multi drug therapy once again.
While Muneer’s leprosy has been cured, the pains in his hands have never fully disappeared. Whenever he plays the Tabla vigorously, he gets pains in his hands. However, he still plays regularly in Hyderabad, and now also teaches the Tabla to people.
He worries that his income isn’t enough to support his children and his wife. He wants his children to get the best education they can.
He wants to let the newly affected people know that constant medication and adhering to doctor’s advice helps the disease to be controlled.
Manikyamma grew up in a leprosy colony in Dichpalli, India. Both her parents were diagnosed and treated for leprosy and she grew up understanding that it was a curable disease. She was diagnosed in 2000 with leprosy, after spending years working in the Lepra guesthouse in Secunderabad. She had developed a pale patch of skin on her hand and was diagnosed immediately. Growing up with parents that had leprosy made her diagnosis a lot easier to handle. She was started on multi drug therapy immediately and followed Lepra’s advice on self-care and prevention of disabilities. Manikyamma was very lucky because she did not suffer any discrimination.
After being cured, Manikyamma became a lab attendant at the Blue Peter Public Health Centre and was then trained to become a lab assistant. She has worked there ever since.
She says she is happy that she can share her experience of leprosy with others and that she can make people more comfortable about their diagnosis.
She says, “There is no need to be worried about the disease. It can be cured through regular medication and treatment.”
Zaibun noticed a small blister on her right hand and by the next morning, her body was covered in painful nodules. Her skin blistered and swelled and she had a high fever. Her entire face was covered in the nodules and she was very frightened. In Osmania hospital, they diagnosed her with leprosy and she was afraid she was going to die.
For twelve months, Zaibun took Multi Drug Therapy. Her husband was very supportive and would often take time off work to bring her to the hospital. The staff at the hospital were unhelpful and both Zaibun and her husband felt as though they were missing vital information about her case.
Zaibun was very unwell. She was feverish constantly and had very little appetite. She visited many temples, including her mother’s temple, in the hopes of finding some way to make her feel better.
After twelve months of intensive multi drug therapy, Zaibun was referred to Lepra’s Nallakunta Leprosy Referral Centre. She wanted help for the painful nodules on her face. Lepra staff reassured her and prescribed her steroids. Gradually, her symptoms reduced and she began to feel more like herself.
She says, “Lepra were sweet and affectionate. They took very good care of me and explained things very clearly.”
During her treatment, Zaibun’s husband did all the housework and cooking. She kept her plate and glass separate because she was afraid he would also get sick. She did not go out during this time, or visit friends or neighbours, but she does now.
“If I was to say to someone newly affected by leprosy, I’d tell them not to be afraid. Take the medication and you’ll be alright. Look at me, I’ve been through this, and I’m very happy now!”.
V N Iyer, 69, is a retired engineer and also lectured at an engineering institute. He developed leprosy in April 2018, which lumps appearing on his face. He visited a private doctor, but they failed to diagnose his decision. He was then seen in a private hospital, where he had a skin biopsy done, and he was told he had leprosy. However, they also incorrectly told him he would die in three months.
Because he lives close to the Blue Peter Health and Research Centre, he went there, and they also confirmed he had leprosy with a skin smear test after three hours. He was put on MDT and steroid treatment and assured that his disease was treatable. The skin lesions got much better after starting treatment. Now he is much better and has no visible patches. He still attends that clinic every three months for a follow-up.
Iyer says he felt unclean when he learnt he has leprosy. He self-isolated from his wife, using a separate towel, crockery, and didn’t share a bed with her until he’d taken treatment for a few months. His daughters, who live in Australia and New Zealand were supportive, as was one of his sisters. However another one of his sisters has not seen him since he was diagnosed. He gave up his teaching job for a year, because he was worried that his students might catch the disease from him. He finally went back to his teaching post after a year, but retired shortly afterwards.
He avoided his friends for four months while taking treatment.
“In India, if you have leprosy, it’s terrible to live. You feel like the life has gone out of you and the word for leprosy in the regional language is demeaning”. There were so many obstacles that he faced on the path to correct information and diagnosis.
“People can get over this disease with courage and determination. Educating women in rural areas about leprosy might help break the stigma.”
