Stories – New Face Of Leprosy

Tohmina

Tohmina is 45. She developed leprosy aged 6 with patches on her face and back. She developed blisters and then ulcers on her feet. Her father tried many medicines with no improvement. A man visiting her home suspected leprosy. Her father took her an NGO health centre where leprosy was diagnosed. Her father then had a mental breakdown over her diagnosis. Her elder brother rejected her from their home saying that she could not stay in the house if she had leprosy. Her father took her to Nilphamari hospital. She took medicine from there and was cured but her ulcers recurred. She married a fellow patient in Nilphamari hospital. The hospital authorities supported their marriage and gave them some money. They went to her family home and her brother rejected her again saying that she could not stay there, and threatened to kill her husband. They came to Mahasthan Gar, Bogura. They rent homes with people but are continually being evicted. Her husband has disabilities and works in a shop. They have just been granted one of the government sponsored houses for people affected by leprosy. It will be a huge help for them. She has one son, Toufik, who is in class 6, but they struggle to pay school fees. He dresses his mothers wounds.

The physical problems are the biggest challenge for her.

“My message to all is that this disease is not an infectious disease, so don’t push the patients away. If someone is in pain please don’t hurt them again.”

Prof Diana Lockwood and Md. Waheduzzaman Polu, the project director for Lepra in Bogura, take a look at the ulcers on Tohmina’s feet.

Prof Diana Lockwood examines Tohmina’s feet

Taufik, helps his mother clean her ulcers and change the dressing on her foot.

Tohmina’s bandages which will be saved and cleaned

Bizly Rani Das, a local mental motivator, also affected by leprosy talks with Polu about Tohmina

Bizly helps Tohmina deal with some paperwork

She and her husband are grateful to Mr Polu, the Lepra officer who has helped them get a new home. She had just received the documents for her new house in April 2023.

Tohmina with the certificate that shows she can move into a government built house. It’s currently being constructed.

09/04/2023 Bogura region, Bangladesh

Photography by Tom Bradley, writing by Prof Diana Lockwood

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Bilkis Begum

Stories / Tom Bradley

Bilkis on the road outside her home. Though she can stand on her feet, she can’t go far, so uses the wheelchair to move away from home.

Bilkis Begum is 60 and lives in a new house provided by the government for people with disabilities. She has 3 daughters and a son. Her husband died when her younger daughter was 1 year old. After the delivery of her last child she developed skin patches. The doctor checking her recognised leprosy and sent her to receive treatment. However she was alone and could not attend the clinic until her daughter was 4 years oin 2012. She took treatment for 6 months and then 12 months. 6. Her original skin patched improved but some new ones appeared. Her legs are weak and anaesthetic. Her left hand is also anaesthetic. She does daily self-care of her hands and feet. She moved into her government house 10 months ago, she had been renting in the slum before that.

Her husband supported her with her disease. But after his death her children left her. Her new neighbours treat her well. The biggest challenge for her is to earn enough by begging.

“Leprosy patients have knowledge about the disease and should be listened to even when they are lower status like herself. The health authorities should take this disease seriously instead of ignoring it.”

Bilkis standing in the little cul-de-sac for government-built homes

Prof Diana Lockwood and Md. Waheduzzaman Polu, the project director for Lepra in Bogura

Bilkis dreams of being able to set up a shop in her home one day

In the meantime, she goes off to beg at a nearby main road in order to make some money.

Photography by Tom Bradley, writing by Prof Diana Lockwood

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Moni Munda

Stories / Tom Bradley

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.