Stories – New Face Of Leprosy

Moni Munda

Moni Munda is 34 years old and works in the tea garden. Five years ago she developed a spot on her face which increased in size. Her parents brought her to health complex in Habiganj where leprosy was diagnosed. She took antibiotic treatment for 6 month. She then married and moved to the Mirzapur tea garden. Nine months later the spot on her face returned. She returned to garden health care centre quickly and was given antibiotic treatment for a year. Now the treatment is still going on. The spot has decreased sensation. she has no other spots. She had 3 children whilst having this disease. The doctors instructed her to do regular self-care of the spots on her face and use ointments. Her husband knows about her disease and is helpful and friendly. Her neighbours and the health centre staff are helpful and kind to her. She has not faced any challenges because she took treatment at the right time and was helped by the people around her. Her message is “get the treatment as soon as you can and don’t be afraid”.

05/04/2023

Photography by Tom Bradley, writing by Prof Diana Lockwood

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Shumi Katun

Stories / Tom Bradley

Shumi Katun is 23 years old, unmarried, and uneducated. She had leprosy aged 9, her father brought her to the doctor for treatment. She lost fingers and toes before taking her one year of antibiotics. She spent time in Shibganj hospital. She does daily self-care. She is wheelchair dependent using it for moving around. She does not work and depends on her father who drives a small van. Her bed is outside the main family sleeping area, inside the house. During the rainy season it is difficult for her to go to the bathroom. She goes outside about 4 times per week. She has difficulty getting off her bed and she needs help. Her family and neighbours have been friendly and helpful to her. Her biggest challenge is limited movement. She is proud of her family and neighbours. Her message is “if anyone get this disease please go for the treatment soon”.

Lepra district coordinator for Bogura Waheduzzaman Polu examines Shumi’s hands

Shumi’s family and community gather as we speak with her

The path is uneven, and she can’t use the wheelchair without help

Shumi is much more adept at getting down from the bed herself, though walking on her anaesthetic knees causes regular ulcers

The table outside the cowshed that Shumi used to sleep on

Shumi can’t write or hold a pen, but we made a polaroid to give to her anyway

11/04/2023 Bogura region, Bangladesh

Photography by Tom Bradley, writing by Prof Diana Lockwood

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Bizly Rani Das

Stories / Tom Bradley

Bizly Rani is 47 years old. In 2012 she developed 30 spots all over her body and thought they were allergic. A health worker noticed her spots when she was accompanying her husband for TB treatment. She was found to have leprosy and started treatment immediately which lasted 12 months. Lepra organised a group of affected people group with 5 members called Shagarika. She has been finding new patients and communicating with other leprosy patients and helping them to get right treatment. She wants other people to avoid the suffering she experienced. She goes door to door finding people with leprosy symptoms. After completing the 1 year course of antibiotics all those spots disappeared and her sensation improved. But one finger of her hand has less sensation and is weak. She has lost sensation in one foot. She had an ulcer on her left toe which can be painful inside and she took extra medicine for 3 months. Now she does self care as the doctors instructed regularly and trains other patients. She has two pairs of special shoes and 2 pairs of sandals provided by Lepra which she uses for outside work. When doctor told her first she had her leprosy, she was afraid but he reassured her that it is a curable disease. Her neighbours did not know about leprosy that so they didn’t understand the disease she had. Her family knew it and they were at her side. The biggest challenge she faced is to connect suspected leprosy infected people with the health care. she has connected 65 patients herself. She is proud of her family, her husband supports her always, he does laundry from home, my elder daughter (28 years old) who completed post graduation and works in the NGO BRAC after her marriage. The next daughter is studying to graduation level and working for ICDDRB in a TB project. Her younger son is studying higher secondary level and has training for glass settings. She is very proud of them. The message she would like to give to everybody that, “its a completely curable disease and if a patient takes a single dose of medicine the spreading possibility will be stopped. So don’t push the leprosy patient away be close with them”.

Prof Diana Lockwood examines her feet, which have anaesthesia, and she consciously maintains daily to prevent ulcers

Lepra program officer Waheduzzaman Polu and Prof Diana Lockwood in Bizlys house

Bizly with her husband, who has been very supportive of her work with leprosy and Lepra

Bizly cooking puri for us in her backyard

Bizly has her hair combed by her daughter

Bizly recognises and helps identify a new case of leprosy in an area of Bogura

Bizly sits with Tahmina, a person affected by leprosy that has been greatly supported by Lepra

08/04/2023 Bogura, Bangladesh

Photography by Tom Bradley, writing by Prof Diana Lockwood

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Taslima Akhter

Stories / Tom Bradley

Taslima wrote a diaristic account of her experiences with, and fighting for leprosy onto a print of her portrait

Taslima Akter is 24 years old, and married with an 11 month old daughter. She is in her final year of studying for a qualification in traditional medicine. She has been working with leprosy patients with Lepra since 2012. In 2017 she noticed loss of sensation on her left little toe. Her diagnosis of leprosy was confirmed by the staff at the subdistrict health complex and she was given a 6 month course of antibiotics. She took the medicine secretly because she feared rejection by society here. Her family members then found out about her diagnosis but they accepted her disease because they knew about leprosy as she worked for Lepra for a long time. She took her antibiotics and is completely cured with no complications. Now she is married, and her husband knows that she works for leprosy patients as a federation leader. But the other members of her in laws house don’t know about her disease. She is an advocate for leprosy patients and fights for their rights. She educates people to understand about leprosy and that patients should be treated normally. She stands beside patients to support them. She is proud of her education because she noticed her symptoms early and took the treatment. The biggest challenge she faces is to make people understand about this disease.

Taslima writing onto her print in the Lepra office in Bogura, Bangladesh

Taslima with Lepra program officer Polu.

A polaroid of Taslima that she wrote on before writing on the larger print

09/04/2023 Bogura, Bangladesh

Photo by Tom Bradley, writing by Prof Diana Lockwoood

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Krishna

Stories / Tom Bradley

“Many people say don’t sit beside me. I am grateful you have.” Krishna’s leprosy was diagnosed when he was 12, he’d noticed patches on his skin and was diagnosed during a leprosy survey. He took Dapsone treatment and had a leprosy reaction with more skin lesions appearing.

He was working as a cow herder but no-one would buy milk from him. His mother sent him away from his village to live in a leprosy colony when he was 20, in 1965. His father also had leprosy. He took treatment for 15 years and had negative skin smears meaning that the treatment had worked. However he was left with numb hands and feet. He started begging when he moved to the colony. His sons asked him not to beg but he still does. “I enjoy being in the market and I earn 100 rupees daily.” He got married here and has 5 children, 4 of whom still see him. He has 5 homes in the area. “I felt suicidal when I was diagnosed. I still experience some stigma, and some hotels may refuse to give me food parcels. So I avoid going to hotels and using the bus, to protect myself from discrimination. However I have been able to return to my village even a few months ago. My friends help me most.”

“I would say to tell new patients to go to the referral centre and be treated. I send about 2 people per month to the referral centre. Because I live in a colony I have been protected from some stigma in working and getting married because the problems associated with leprosy are understood in the colony.”

Prof Diana Lockwood and Lepra Program Officer Swamy Reddy interview Krishna

18/11/2019

Photography by Tom Bradley, writing by Prof Diana Lockwood

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Sharna Bala

Stories / Tom Bradley

Sharna is 25 and developed leprosy aged 10 with spots on her skin. People in her hometown Shirajgonj, did not know about leprosy. Her leprosy was only diagnosed much later after her marriage when she moved to Sreemongal when government health workers were looking for leprosy in family check-ups. She was married during her first year in college and did not complete her higher education. She took 12 months multidrug treatment with antibiotics from 2018. She now has a few spots on her back.

During her treatment she met with leprosy affected people and started working with them in the federation from January 2023. She monitors the leprosy patients, helping them to continue their treatment and regular self-care. She has two kids, one son aged 8 and one daughter aged 3. She has normal strength in her hands and feet. Her husband was with her during her journey to fight with leprosy. He encourages her a lot. Her neighbours respect her because of her job in federation. She is a leader in that community. She wakes up at 6am and then cooks and does housework. Her husband works as a driver from the morning. She then does federation work and some house visits. Her message is “Be strong, don’t lose hope and fight” she is proud of her husband, kids, the people she works with and her education.

Sharna working with Heed Bangladesh and Lepra to monitor those affected by leprosy

Sharna with the depigmented patch on her back

Sharna bringing some homemade snacks to the New Face for Leprosy/Lepra/Heed Bangladesh team

04/04/2023

Photography by Tom Bradley, writing by Prof Diana Lockwood

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Bilal Mia

Stories / Tom Bradley

This 40 year old developed leprosy two years ago with nodules on his face. His neighbour looked on the internet and suspected leprosy. He visited his local health clinic but the staff did not recognise leprosy, he then visited the civil surgeon and his disease was diagnosed. He started treatment with leprosy multidrug therapy. After taking the treatment his nodules faded but he developed the brown clofazimine pigmentation which is a complication of leprosy treatment.

He lost sensation in his hands and feet. The sensory loss in his hands is improving. After the diagnosis he was fired from the job he had done as a school guard for 14 years even though they had helped him to be diagnosed. They did not give a reason for the firing, saying they did not need him any longer. He was angry with his past employers. He is poor and cannot afford legal action against his employers.

He cannot drive his rickshaw because of his health problems so he has little income. His daughter was studying in the 9^th standard but had to stop because he had no money to pay the fees. He became angry and depressed when he was diagnosed. His neighbours have supported him and he has not experienced stigma from them.

Prof Lockwood examines the nodules on Bilals face.

Poresh Debnath and Prof Diana Lockwood speak with Bilal about how Lepra and Heed can continue to support him

04/04/2023

Photography by Tom Bradley, writing by Prof Diana Lockwood

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Indramani Urang

Stories / Tom Bradley

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

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Muneer Khan

Stories / Tom Bradley

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.

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K Manikyamma

Stories / Tom Bradley

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.”

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