February 2021 – New Face Of Leprosy

House of Lords Exhibition

The Lepra reception was held in the beautiful House of Lords, in a room with elaborate
Victorian decorations and beautiful views of the river Thames on a winter evening. The
event was hosted by Lord Ghadia, a Lepra supporter. Five people spoke: Lord Ghadia, the
Duke of Gloucester (the Lepra vice president ), Charles Bland (chair of Lepra Trustees), Dr
Pahan ( Lepra doctor and country director working in Bangladesh), Diana Lockwood and
Geoff Prescott (Lepra CEO). Dr Pahan talked about psychological support Lepra gives to
people affected by leprosy through the mental motivators project. Charles Bland talked
about the importance and global reach of Lepra’s work. Diana described seeing patients
affected by leprosy in London and worldwide and the stigma they experience as a common
experience. This led to the New Face for Leprosy project and the work we did with Ethiopian
people affected by leprosy. Geoff Prescott spoke last, angry about the ancient prejudices
associated with leprosy because it is a curable disease, which with good antibiotics and
better health services should become a minor disease. People enjoyed looking at the
photographs of affected people in India. Seventy people attended the event many from the
Indian diaspora living in the UK and from Trusts and Foundations that had supported Lepra.

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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.

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

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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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