Stories – Page 2 – New Face Of Leprosy

Zaibun Begum

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!”.

Interview by Dr Diana Lockwood. All photos taken in Hyderabad, India 2019 ©Tom Bradley

“My name is Zaibun Begum. I have suffered for 3 years. I started taking medicines regularly, and now I am happy. Take your medicines on time!!”

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V N Iyer

Stories / Tom Bradley

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.”

Interview by Dr Diana Lockwood. All photos taken in Hyderabad, India 2019 ©Tom Bradley

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Patlavat

Stories / Diana Lockwood

Patlavat is 38 years old and was diagnosed with leprosy 12 years ago. She gave birth to her daughter and shortly afterwards, developed blisters on her feet. She visited a private doctor, who did not diagnosed her leprosy and prescribed injections for a disease she did not have. The private doctor was very expensive. Patlavat saw no sign of improvement and visited a local hospital. There, she was diagnosed with leprosy and sent to a Lepra referral centre. She was prescribed Multi Drug Therapy (MDT) for twelve months and had good counselling. The sensation in her feet and hands slowly improved. Every second day, Patlavat practices the self-care Lepra taught her and bathes her feet. Only her sister in law knows that Patlavat has leprosy. Her husband, an abusive alcoholic lives away in Hyderabad and returns occasionally to demand money. She is the main bread-winner of her home, working as a building site labourer, carrying cement and doing other heavy menial jobs. Patlavat says her children give her hope. She is now an expert in leprosy and has guided other new patients affected by leprosy to the referral centre.

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Aruna

Stories / Diana Lockwood

Aruna visited many local doctors after developing painful swellings in her hands. No one recognised her symptoms as leprosy until she was eventually referred to one of Lepra’s Referral Centres. She developed a reaction to her leprosy treatment and required steroids.

While undergoing treatment, her skin lesions improved and she noticed less swelling. Her husband and son have supported her throughout her treatment and her son brings her to the Referral Centre whenever she needs to attend.

She says, “Not being able to work properly was the hardest part about having leprosy. I felt sorry for myself. I keep going because of my children. I want to see them all married.”

Aruna encourages people to take their medication, as it will make them feel better.

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