New Face for Leprosy

Bahar is 40 and was diagnosed with leprosy in 2016 when he developed skin patches on his hands, and a health worker recognized leprosy. He took antibiotic treatment. He then developed nerve damage affecting his hands and feet, with loss of sensation. He has ulcers and does daily care to prevent further damage to his hands and feet. He has not faced stigma from his family. His family and neighbors accept him, encourage him, and stand beside him. He worked in the tea garden for many years; his son has taken his place there and the responsibilities of running his family. He has one daughter and one son.

Their financial condition improved by rearing the goat given by LEPRA. They get milk from the goats and breed them to have more goats that they can sell. He is proud of his family and neighbors; they encouraged him to face the biggest challenge of his life, which is “fighting with leprosy.”

“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.”

Rupon is 49 and has four children. She lives with her younger son and husband, both of whom work in the tea garden as labourers. She noticed blisters on her right foot 5 years ago (2018). A health worker recognized this as leprosy, and she started treatment at the Lepra clinic. She took multidrug therapy for 6 months. Unfortunately, she then developed an ulcer on her foot. She does twice daily foot self-care; she wears the (MCR) protective sandal. 

Her neighbours have accepted her diagnosis and encouraged her to get treatment. Her son and daughter accompany her to clinic appointments. She feels sad that her protective footwear stops her going to the temple because she cannot be barefoot there. She is proud of her family who have supported her. When she sees people with symptoms, she shares her experience and gives them hope. Her finances have improved after breeding the goat given by LEPRA; they have milk and meat from the goats.

“My first husband left me after I was diagnosed with leprosy.” That was when Chilakamma was 40, after she developed skin patches and rapid deformities on her feet. “I lost sensation on my feet gradually.” She was prescribed multi drug therapy for two years. She has four children, all now in their forties and fifties. “But my sons have moved away, they don’t want to be near me. My daughters are nearby and I had no difficulty arranging their marriages.”

“When I was diagnosed I felt very depressed and stopped meeting friends. I still feel low sometimes although my friends are supportive. Their names are tattooed on my arm.” She soaks her feet every three days or so to keep her skin supple, and wears protective MCR (micro-cellular rubber) footwear from the clinic.

“I receive a disability pension. And I still chop wooden panels down to smaller pieces which I sell. I earn 500 rupees per month from that. I go to church regularly and visit the temple. I have taken four people who might have leprosy to the referral centre.”

Shuvadra is 60 years old and developed leprosy last year (2022) with skin spots on her hand. These were noticed by a health worker when she was depositing money for an NGO. She was diagnosed with leprosy and took a 6-month course of antibiotics. Her feet and hands became anaesthetic and she developed a foot ulcer. She practises daily self-care for her feet. She is in a 10-person group who help each other with self-care. She finds this a good way of communicating about leprosy. She advises people not to be depressed about having leprosy. Her biggest challenge was surviving on the tea workers salary of which was only 127 taka (93p) per day for many years. With recent campaigns against this extremely low wage, this has now been increased to 170 taka (£1.25). Her daughter now works in the tea garden.

Papakanti is 30 and works as a cotton picker. She’s married with three children (14, 20, 22), all of whom have had or are being educated. “My eldest is doing her Teacher Training degree.”

“4-5 years ago, I noticed patches on my face and arms. I visited a healer who prescribed herbs. After that didn’t work, I went to various clinics and doctors but they did not know it was leprosy, they thought it was from an animal bite. Eventually a doctor suspected leprosy and I went to the Referral Centre where I was successfully diagnosed.”

Papakanti took MDT for a year as well as steroids for the reactions.

“My hands, face and feet were swollen and I could not work.” The swelling and patches lessened once she was taking MDT, and she did return to work. “But I was unable to work for 3 years because of my leprosy reactions. One month after starting medication I was able to use my hands to grip again. Though I still have weakness in my grip.”

“I was depressed after my leprosy diagnosis and stayed inside. I felt confident once the medication started working.”

Her husband was very supportive and comforting. “The staff at the Centre were also kind.”

“Everyone in my village knows about my leprosy. They were afraid I would die before I had my treatment. Very few people avoided me in the village. Now I am cured, people visit my house.”

She told other patients when at the Referral Centre about the benefit of taking MDT. “Be regular with your medication, be patient, it will work”.

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, and was finally diagnosed with leprosy at the health centre and was started on treatment. Her toe needed removing with surgery and has still pain when walking. Her biggest challenge is her pain and ulcers.

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. 

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 and was diagnosed 10 months ago. She developed a reaction to her leprosy treatment and required steroids.

“The Government health worker gave me 12 months of medication, which I took regularly.” We saw her finished packets and her current ones. Unfortunately, she had lost one of the Rifampicin capsules from her next month's treatment.

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.

Aruna is a field labourer. She has five children and four grandchildren. “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. 

Bilal 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 9th 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.   

Rasu is 53 and lives with his wife who works in the tea gardens. He was diagnosed with leprosy in 2006 but only took a partial medication course. He then lost sensation in his hands and feet. They became weak, and later damaged. He lost an eye in an accident when he was a child. He fears that black magic has caused his eye and leprosy problems. Every morning he does self-care to protect his hands and feet and wears protective sandals.

“People should not be afraid of this disease. I am proud of my family and neighbours who have helped me.”

Image: Rasu sitting in the tea shop across from his home  

Patlavat is 38 years old and was diagnosed with leprosy 12 years ago.

“It was shortly after I gave birth to my daughter that I began developing blisters on my feet. I visited a private doctor.” The private doctor misdiagnosed her and prescribed her injections for a disease she did not have. “He was very expensive.”

Patlavat saw no sign of improvement and decided to go to 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 underwent strenuous counselling. The sensation in her feet and hands slowly improved. Unusually she had a lesion in her mouth, leaving a palate. “I don’t remember when that started.”

She has three children, two boys and a girl. “I’ve been a construction worker for the past three years.

Every second day, Patlavat practices the self-care LEPRA taught her and bathes her feet.

“Apart from my sister-in-law, no one knows I have leprosy. It makes me sad.” Her husband is an alcoholic and is very abusive towards her. He lives in Hyderabad and returns occasionally to demand money and steal from the house.

“I live for my children.” 

Sharna is 25. She developed leprosy aged 10 with spots on her skin. People in her hometown of 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. 

Image: Sharna in her room writing her journal

Mandula is 45. He works as an agricultural labourer. “I have four children and share a house with my wife, 2 brothers and 14 other family members.”

He developed deformities on his hands and feet. “I saw private doctors a few times. I then went to the Blue Peter centre at Cherlapally. Here I was diagnosed with leprosy. I was referred to my local Mehboobnagar centre for treatment and given 12 months of antibiotics.”

“My father also had leprosy and developed deformities. When I learnt I had leprosy I did not want to attend family gatherings, but my family were supportive.”

“I practice foot care by soaking my feet but I have ulcers at the moment. Working and earning money is important to me, but protecting my hands is not possible in the fields.”

“I have referred several people with possible leprosy to the referral centre. Take medicine and you will get better.”

Nayan Induar is 62 years old and lives in Moulvibazar. He developed leprosy in 2020 with loss of sensation on his feet. The LEPRA team helped with his diagnosis of leprosy and he has taken 12 months of MDT. He does self-care twice daily and some sensation is returning in his feet. LEPRA provided him with protective sandals. He works in the tea garden as a security guard. Resting is difficult because he is the only wage earner in the family. He says he will rest when he can. His three children attended a local missionary school and have done well academically. His eldest son is doing postgraduate studies in engineering, his second son is also studying engineering. His daughter is at school. He grows many vegetables in his garden and chops wood.

His message is “don’t be afraid, go for treatment immediately. I know some patients affected by leprosy and they are doing well by following the needful process.

His biggest challenge is earning the money to repay weekly the micro credit loan he took from NGO for his children can continue their studies. Sometimes he feels depressed and tensed when thinking about his condition. But when he thinks about his kids he has the light of hope that when they complete their studies, they will bring good days and his time of struggle will be over.

Image: Nayan in his house.

Samida Begum is a 35 years old divorcee with two children aged 3 and 6 living in her elder brother's house. She has no income and is completely dependent on her brother. Her first signs of leprosy were 10 years ago when her fingers became clawed, first her right, then her left hand. Her hands and feet became anaesthetic.

She started her antibiotic treatment in 2022 but did not complete it. She developed a deep foot ulcer which needed daily dressing. One of her neighbours advised her to contact LEPRA. She was restarted on her treatment and has now completed 9 months of taking antibiotics.

She does regular self-care and hand exercises. She uses protective sandals and needed new ones 3 months ago. Her husband left her and their children and remarried because of the disease. He takes no responsibilities for her and their kids. When she conceived the second baby he was already secretly married to another woman. She cannot take legal action because of her health and finances.

After he left she moved to her brother's house. “All other people around me except my husband are helpful and friendly”. Her biggest challenge is to survive this without her husband. She is proud of her brother and his family.

“Don’t be afraid of this disease, take treatment.”

Image: Samida with her son  

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.

“Get the treatment as soon as you can and don’t be afraid”. 

Image: Moni in the Tea Gardens she works in.

Mohamed is 38 and works as an auto driver picking up 6-7 children each day for the school run. “I have lived in this area all my life.”

“In January 2003 I developed deformities of my hands and feet over a few months. I visited private doctors and was given treatment but with no improvement. In 2015 I developed red patches on my face. I went to Osmania hospital and was diagnosed with leprosy there and referred to Nallakunta Centre for treatment.” He took MDT for 12 months.

“I was terrified when I was told about my diagnosis. Only my parents and my wife know about it.”

After marriage, his wife asked him why he didn’t inform about the disease earlier. He replied “mujhe khud nahi pata iss bimari ke baare mein” meaning “I have no knowledge myself that a disease called ‘leprosy’ exists.”

He takes good care of his hand and feet by soaking them in water and cleaning regularly. “I also avoid places where the temperature is quite high.” He wears normal footwear instead of MCR footwear provided by the referral centre because he doesn’t want people to ask questions about the footwear. He’s faced stigma very few times, usually from passengers spotting the deformity on his hand before they get in his auto.

“I am happy living comfortably with my family. I don’t want them to suffer. I want my children to be highly educated and settle in a good position, unlike me driving an auto.”

“If anyone is suffering from leprosy, I will tell them to take regular medication.”

Binoy Chasha is 44 years old and lives in Moulvibazar where he works in the tea garden. Over 2 years ago he developed an ulcer on his foot. He saw many doctors but no-one diagnosed his leprosy. His disease progressed rapidly and he was unable to walk and his feet were cold.

Ashit, a community resource officer saw his ulcer and brought him to the LEPRA clinic at Heed. Binoy took antibiotics for 12 months, his feet improved a lot and he was able to walk again and resume work in the tea garden. He now feels much better. He remembers seeing the bone close to the ulcer. His wife was the wage earner then and his 5yr old daughter stayed at home.

He had no money when attending the clinic, his wife took a loan from a micro credit NGO. He had difficulty getting the steroid medicine that he needed to treat his leprosy complications. His wife showed that prescription to the garden authority hoping that they would help them to buy the medicine from outside as the hospital does not have it. But the authorities didn’t help them at all and also lost the prescription. Fortunately, they had photocopied that prescription and then got the medicine from the district civil surgeon office. The ulcer on his feet has healed and sensation in his feet has improved.

He has 2 daughters, the second daughter was born after his disease diagnosis. He thanks the health care people and his neighbours for their appreciation and help. However the tea garden authority did not support them. With his wife they worked hard and built their house. The most challenging part was being diagnosed with leprosy, and then take the treatment. They then faced a financial crisis. He carries and serves the drinking water to the workers. His wife does temporary work, plucking leaves and cleaning.

Image: Binoy at the Tea Gardens he works in, carrying water to and from tea pickers.

Muneer is 59. He has been a professional tabla player for 30 years. Tabla is a pair of small hand drums used in Indian music, one of which is slightly larger than the other and is played using pressure from the heel of the hand. His father, grandfather and even great grandfathers played the tabla.

While playing in Kolkata, Muneer developed pain and weakness in his hands. He visited a doctor in Kolkata 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 stopped taking the multi drug therapy. During this time, Muneer was very upset. He avoided getting married until he was 42 and his wife still does not know he has leprosy.

When he left Kolkata, Muneer decided to resume treatment for his leprosy. At this time, 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, Muneer gets pains in his hands. He now teaches the Tabla to people and he still plays regularly in Hyderabad.

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 know the newly affected people that constant medication and adhering to doctor’s consultation helps the disease to be controlled.

Bijli Rani is 47 years old. In 2012 she developed 30 spots all over her body and thought they were an allergic reaction. 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 brought together a group of affected people with 5 members called Shagarika. Since then Bijli has been finding new patients and communicating with others affected by leprosy 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 the doctor told her she had leprosy, she was afraid but he reassured her that it is a curable disease. Her neighbours did not know or have any understanding about leprosy. Her family knew about it, but they were at her side. The biggest challenge she faced is to connect suspected leprosy-infected people with the health care system. She has connected 65 patients herself. She is proud of her family, her husband supports her always and he does laundry from home. Her elder daughter (28 years old) has completed post graduation and now works in the NGO BRAC since getting married. 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. 

Image: Bijli with her middle daughter who works for ICDDRB, and Bijli out in the community advocating leprosy to the neighbourhood.

Manikyamma is 52. She 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.

“There is no need to be worried about the disease. It can be cured through regular medication and treatment.”

Hajer Ali is 75. He worked as a sand collector. He has two children, a son and 1 daughter. He lives with his son, a rickshaw van driver, and grandchildren.

He saw blisters 30 years ago beside his left toenail and right hand after finishing work. The ulcer increased in size but he continued to work. The ulcer spread and he saw many doctors, but none diagnosed leprosy. He went to Nilphamari DBLM hospital where leprosy was diagnosed. He stayed there for a month, but his ulcers did not improve and he had foot and finger amputations. He was a rickshaw driver in Bogura 26 years ago and Mr Polu the medical assistant from LEPRA saw him at the roadside and brought him to LEPRA where he took a years course of antibiotics. He felt better after the treatment, his ulcers healed, and sensation returned in his hand and feet.

He is in a 10-person group created by LEPRA who help each other improve their health and life. He does self-care regularly as LEPRA trained him, his condition is improved, He can now work properly with his hands and feet. He will do his self-care after the interview. As a member of federation he goes door to door to find patients with leprosy symptoms. When he finds someone with leprosy symptoms he says “Don’t be afraid, it’s a curable disease. I had it and I can bring you to the treatment.” He helps people by sharing his experience of leprosy. He’s had special Micro-Cellular Rubber sandals since 2011. He came from a poor family with no education. His family and neighbours are helpful to him but when he had a bad ulcer his neighbours kept their distanc. His family is always with him. He drove a rented rikshaw for 40 years and then got a loan from LEPRA and bought a rickshaw. He repaid the loan within one year he built a house. He no longer works. His elder son has taken charge of the family. He is proud of his family.

Image: Hajer on the rickshaw van he used to drive, now taken over by his son

Tomina 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 to an NGO health center 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 who has not attended school. He dresses his mother's 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.” 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.

V N Iyer, 69, is a retired engineer and also lectured at an engineering institute. He developed leprosy in April 2018, with lumps appearing on his face. He visited a private doctor, but they failed to diagnose his condition. 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.

“I felt unclean when I learned I have leprosy. I self-isolated from my wife, using a separate towel and crockery, and I didn’t share a bed with her until I’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.

“I gave up my teaching job for a year because I was worried that my students might catch the disease from me.” He finally went back to his teaching post after a year but retired shortly afterward.

“I avoided my 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 I 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.”

Story of my life….

I am an unnamed leprosy affected person. Since 2012, I have been involved with a leprosy development organization of LEPRA Bangladesh. My aunty was a leprosy affected person, and people from this office used to go there. Gradually, a self-help group developed, and I also became a member of that group. I participated in various meetings and received training for both the group and personal development. The office provided some financial support as seed money to the group, from where the group members took small and started businesses, and gradually, the group began focusing on development.

Then my career began. Alongside my studies, I loved working. My first job was with the FARLeB (Further Action to Reduce Leprosy Burden) Project of LEPRA Bangladesh as a community volunteer. Alongside project work, I worked with the group, searched for new leprosy patients through community awareness, and continued my education. Then I got the opportunity to work with the Amra Kori Project and then the Nutrition Education Project (NEP), from which I learned a lot and taught others. Many years passed while I was working; I passed the Higher Secondary Certificate (HSC) exam. In 2014, I was admitted to Hamdard Medical College, and in 2018, I graduated.

In 2017, I started feeling the symptoms of this disease in my own body. I felt less sensation in two toes of my left foot, and a tingling sensation was there. I didn't tell anyone anything for a few days, keeping an eye on my own condition, whether it was sudden or gradual, whether it was improving or a permanent problem. When I realized that these toes weren't normal and matched the symptoms of leprosy, I went to the Upazila Health Complex and started taking medicine. At first, I was afraid to tell my family about this disease, fearing what they would think. I knew that not everyone accepts this disease easily. Even if they accept it verbally, they may hate it internally. I didn't tell anyone because of this fear. I quietly took the medicine. One day, my younger sister saw and asked, and then I told her the truth. They accepted me, but I couldn't tell anyone else in society.

I got married in the year 2019. My husband knows that I am involved with the leprosy development organization, but I am a leprosy patient, he doesn't know. My in-laws also don't know that I was a patient. In my mind, there was a burden that if they didn't accept me after hearing this, what would I do, society would see me with neglect.

Even after marriage, I worked as a mental motivator from my mother-in-law's house. I became a leader of the group, and then worked as a leader at the sub-district level, and now I am working as a secretary of the district federation. Now my wish is to have a good job or business. I have arranged wheelchairs for the patients of this organization, arranged government cards (disability allowance, old age allowance, widow allowance), and arranged government houses. I arranged blankets and food support. I raised awareness on COVID-19 during the pandemic. Working with this organization and the patients, I feel very good from the heart. My desire is to be involved with this organization for my whole life."

Actions to be taken for All Patients:

• Arranging skill development training and opportunity for express their skills for leprosy affected persons will be benefited everyone.

• Providing for the educational expenses of neglected leprosy affected persons' children will be benefited everyone.

• Offering a one-time financial aid for the marriage of helpless leprosy affected persons' children will be benefited the family.

• If this organization for leprosy patients can be developed into a business enterprise, all leprosy affected persons can benefit from it.

• In any project within the federation, leprosy affected persons should be given priority.

• Discrimination must be eliminated and appropriate measures should be taken for that.

• Equal rights must be ensured for all our leprosy affected persons, just like for the general public.

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 old in 2012. She took treatment for 6 months and then 12 months. Her original skin patches 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.”

Image: Bilkis on the road outside her home on the way to where she begs in the wheelchair

Binapani Chakrabarty is 82 years old. She has 2 sons and 3 daughters, married. Her husband died 4 years ago. About 25 years ago she found spots without sensation on her body, and after her younger son was born she developed numbness in her right hand and left foot. She didn’t understand the importance of these symptoms and continued her life and work. She developed blisters after cooking which became an ulcer on her hands. She was diagnosed with leprosy at the health complex 5 years ago and started antibiotics which she took for 12 months, and her ulcers cured. She lost fingers and toes before completing the course. The doctor told her to keep her hand and feet clean. She was instructed in self-care, but she does not do it. Now there are no ulcers on her feet and hand, sometimes small ulcer develops and cures quickly. She thinks that if her husband and sons were aware of her symptoms, she would not have had such severe disease. She asked them to take her to the doctor but they did not. She went to the doctor alone. She begs for money. Her neighbours allow her to stay in their house. She has few needs, eating once a day, and does not beg every day. Her sons and daughters have not taken care of her. Her grandson visits and pressurizes her emotionally for money. She loves them so tries to give them money. Her neighbours are taking care of her and are unexpectedly kind to her. She has known Mr Polu, the LEPRA medical worker for 5 years and they meet 4 monthly and he supports her. She can read.

For her the biggest challenge was to accept her own children’s negligence. “Don't ignore those who are already in pain”.

Image: Binapani in the doorway of a neighbour who often cares for her

Ramadevi is 36. She works as a maid servant in people’s homes. She has 2 children aged 13 and 9.

“My husband deserted me in 2013.” He was an alcoholic and abused her. “I live with my mother and younger brother and my children.”

She developed patches on her skin in 2007. “I visited private doctors but no diagnosis was made until 2014 when the patches became red. A Government doctor thought it was leprosy and I was sent to Nallakunta Referral Centre." She took MDT for a year but then got ENL reactions with fever and painful red spots on her skin. “I needed to take 8 steroid tablets a day to prevent the reaction. I have a painful ulcer on my leg which gets worse with stress.”

“My mother and I cried a lot after finding out I had leprosy as there was no father or husband to help, and my children were very young to look after. Only my mother and brother know the diagnosis. I avoid going to functions in case people notice my deformity and question me.”

Ramadevi has been helped with constant counselling at Nallakunta Referral Centre.

“My son is being provided with education support. He is studying English language. When I feel low, I think about my children and motivate myself to see them educated.”

“I suggest to newly affected persons that medication should be taken regularly and need not worry about the disease.”

Saidulu is 43. “I work as a contractor demolishing small buildings.” He grew up in Nalgonda, and has worked as a farmer and a security guard. “My first wife died in an accident. I married again in 2007 and have 3 daughters.”

“My leprosy problems started with my hands becoming tight and stiff. At the age of 12, in a medical camp, I was told that I had leprosy and given medicines which did not improve my condition. In 2009 I noticed skin patches on my face and body. I saw private doctors, then I was sent to Nallakunta Referral Centre. Here I was given footwear to prevent my feet becoming injured, and I can now walk comfortably. I use them regularly including at work. I avoid heavy work and do not go near hot objects. I regularly apply Vaseline to my hands and feet.”

“I tell people that my hands are clawed because I had an electric shock in the village. In my village, everyone is aware that my hands are deformed, so I moved to Hyderabad for better living.”

“I was sad when I was told that I had leprosy. I did not tell my second wife about my leprosy before the marriage. She learned about my disease only afterward, and she is completely supportive. I get a disability pension from the government which helps my finances.”

“Newly affected persons can be advised that we have medication for all major diseases these days and need not worry about leprosy. Be careful and take your medication regularly and everything will be alright”. 

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.

“If anyone gets this disease please go for treatment soon”.  

Image: Shumi on her bed which is on the porch of her family home

Jeba Khatun is 39. She was married aged 13 and has one son and one daughter. She and her husband studied to the 10th standard. Her husband is a handloom worker. Her son is in the Bangladesh Navy. Her daughter is studying agriculture. She developed the signs of leprosy aged 10 with spots on her face. Her stepmother rejected her because of her leprosy; her mother died after the birth of her younger sister. Her father took her to Nilphamari Hospital, where she took 6 months of antibiotic treatment there, but new skin lesions appeared on her body and then ulcerated. Her younger sister stayed with her in hospital. Her hands and feet worsened even after completing treatment. Her stepmother continued to reject her and disappeared with her father. She lost her younger sister when they were at a railway station and has never seen her again. A security guard took her to his home in Pabna. Her adoptive father brought her to many doctors, but none diagnosed her with leprosy health. She didn't tell him about her leprosy because she was afraid of abandonment again. Her adopted uncle knew about the LEPRA team, who visits monthly, and suggested that she should go with them to see the health workers. She was again afraid of her diagnosis being known and missed them the first month they visited. Her uncle brought her to those doctors’ team the next month. She met Mr. Polu, the LEPRA team worker who told her uncle about my leprosy, and reassured him. She took another 12 month course of antibiotics in secret. Her father, a poor man, received a marriage proposal for her and could not bear the expenses of a wedding but thought that it would be good for her to have a family. After her marriage she stayed in her fathers house so that she could keep taking medicine secretly. Her husband allowed her to study, but she became pregnant soon and could not take her exams after the 10th standard. Now she has no sensation on the fingers of her left hand but does have sensation in her palm. Her right foot is anaesthetic. Her daughter had leprosy and she brought her for treatment and now she is fine.

“Don't waste your time go for the right treatment in right time you will beat leprosy.”  

Image: Jeba at the house of a near-blind woman whom she has helped.

Sarada is 32. She lives with her husband, a pastor, and their two children. “My 18-year-old daughter stopped school in 7th class as she didn’t want to go anymore, so she helps me at home. My 16-year-old son is in class 9. I’d like him to get a good education and not just have small jobs.”

“I work 3 hours a day as a maidservant in another household. Otherwise, I am looking after the home only. Sorry if it’s busy today, it’s my cousin’s daughter’s wedding so there are lots of people about. 8 months ago, I got a small patch on my cheek. I went to 5 or 6 private practitioners in a large hospital, but there was no improvement. In total we spent perhaps 12,000 INR on consultations and medicine.”

“Then 2 months ago I went to a PHC here in Filmnagar – and the doctor suspected it was this disease and referred me to LEPRA (NLRC).”

“I was really afraid. I thought, how could I have this?? My relatives don’t have it. I didn’t really know much about it before, but I thought of it as an untouchable disease, and I cried all night before going to LEPRA. I didn’t sleep at all. The doctor had told me there was no need to be afraid, and that it was treatable, but still I worried. I was waiting outside the clinic before it even opened at 9.15.”

“There at LEPRA, they gave me courage, and I learned many things about the disease. I was put on medication and the swelling, pain and redness reduced very quickly. My appetite had gone for the previous 6 months too, but that’s back to normal now too. My husband has also been very supportive and comes with me to the centre. However I’ve not told my children, and I don’t want anyone else in my family to know about this. If they find out, they may treat me different… keep their distance. Once that happened with a relative in my family who got TB – everyone kept their distance and treated them differently. I don’t even want them to find out after treatment is completed.”

“I’m currently on month 2 of 12 of the treatment (due to enlarged nerves, but she should only be on 6 months as smear test was negative). I missed one week by accident as a relative was very unwell and it slipped my mind. No one has asked too much about what the medicine is for – I have very bad acne, so they just think it’s related to that.”

“There is a notion that people with leprosy are isolated and told it is not curable, but I’d tell them to be brave as there is advanced medication and health education these days, so they need not worry if proper medication is taken.”

Balamurali is 47. “Myself and my 3 brothers live in this building, each on a different floor with our families. I’m on the bottom floor, my name is Balamurali. I live with my wife, son and two daughters. My eldest, Devika (18) is currently studying a BCom in Computer applications. Her 17-year-old sister is in 12th class, and my son, 13, is studying in 7th class.”

“Everyone in my family knows I have leprosy, including my brothers. I lost sensation in my feet around 1996/’97. I was around 20. I went to a family doctor who referred me to Dr Uday Kiran. He and his family have been extremely supportive of me. He was actually in a private practice at the time, but I was poor and didn’t have any money, so he didn’t charge me anything. It was he who even helped arrange my marriage.”

“I took treatment for a year. But then I developed ulcers. I was at my grandmother's funeral, and they burned her body. I was standing close to the fire, but couldn’t feel the heat and got burn blisters on my feet. For ages after that I never went near fire.”

“When I was first diagnosed, I didn’t feel like doing anything. I was worried about my future, what would happen to me. I’d seen beggars hanging out around churches and temples… I’d seen their deformities. I feared this may happen to me. But Dr Uday counseled me regularly. He told me I’d be cured like any other disease.”

“My father was a contractor and Dr Uday suggested I help him with that to keep myself busy. Around 2000, I was referred to NLRC, then Shivananda as an inpatient, where they gave me MCR chappels and taught me self-care. I’ve been wearing them ever since, and for the last 13 years I’ve not had an ulcer.”

“I got married in 2001. Initially I didn’t tell anyone, including her. When people asked about my deformities on my feet I just said it was an accident. My wife was asking why I was getting wounds on my feet, so I told her. It was shortly after our first daughter was born. I told her family about it too. They actually went to Shivananda without me realizing to enquire about it. They were reassured by staff there and now they give me special care.”

“Generally I don’t really tell the neighbours or friends I have this, they think it’s from an accident, and why should I tell them otherwise? I have a good relationship with people in the neighbourhood because of my father.”

“For much of the last 10 years I’ve worked as a security guard, as being on a building site wasn’t good for my feet – I had to climb buildings and there was a lot of rough ground. I just finished a job last week, and I’m going for an interview for a new one next week. I generally take very good care of my hands and feet. My daughter’s education is supported by LEPRA through the ORACLE project “Chaha”. My wife currently works assisting the chef at Golkonda Hotel.”

“With God’s grace, with LEPRA and Dr Uday, I am comfortable. I work a little less than others, but I can maintain my family. I have no regrets.”

“My suggestion to those newly-affected is not to worry about the disease. Just take regular medication, eat healthily and use footwear if necessary.”

“My name is Anasuya. I’m 33, married, with a 6 year old son and live in the Mother Theresa Leprosy Colony. My husband works in an Aluminium Factory, and, like me he’s also affected by leprosy. We got married in 2007.”

“I was brought up about 250km north of here. When I was 11 I got a patch on my right thigh. Shortly my left hand began to claw and my right foot dropped. I lost sensation in both those places. I used to try and hide it from everyone. Two other people from my village had already been separated because of this disease. My mother had died a year earlier, and my father was an alcoholic who never took care of the family.”

“At age 11 I wanted to commit suicide. I even brought some pesticide, but I remembered my elder brother and grandmother, and couldn’t because of them. I think my grandmother guessed I was feeling suicidal and she loved and counseled me.”

“Initially I was taken to a doctor who incorrectly diagnosed the disease, and gave me the wrong medicine for a year. Then I was put on some local herbal medicine. In fact it was herbal doctor who told me I had leprosy. It was at that point I thought this is the end of my life.”

“Eventually, in around 1998 I was taken to a neurologist in a government hospital, and was finally diagnosed and referred to a leprosy hospital in Jagikyal. I took MDT for a year, and in 2004 was referred to Shivananda hospital for reconstructive surgery on my hands and feet.”

“I had stopped going to school by class 7 as I didn’t want anyone to look at my claw hands and ask questions. Still until today, nobody in my village knows that I had leprosy. I told people that after my mother died I became weak from lack of nutrition. I used to travel 20km every month to pick up my MDT medicine. They said they could deliver it to me, but I didn’t want anyone coming to the village. The doctors had told me everything will be alright with the medication, but it was mainly counseling from my grandma that got me through.”

“My mother lost her vision when I was about 7. My father and the whole family converted to Christianity so that it might get restored again.”

“While I was getting reconstruction surgery, the physiotherapist arranged my marriage with one of the other patients getting surgery at the same time, although it was two years until we were actually married. My husband is 10 years older than me. We got married on 1st May 2007, and moved into our own home straight away as there wasn’t much room at his parents. We heard about this colony where the government gives the plot of land for free and moved here a year later. My brother lent us money to build the house.”

“My brother is 3 years older than me and an auto driver. Alongside my grandma, he has always taken very good care of me. His son is the same age as mine and he lives here with my family as he can get a good education in the same school.”

“Until 2011 I was a house wife only, but I was dreaming of doing some work. At that point, the Chetana project funded by the Sasakawa Foundation came along and I was made the ‘lokdooth’ – educating ASHA workers about leprosy and also counseling those affected. I also helped them do dressings for their ulcers. I was taught self-care at the first hospital I went to, and have taken care of myself ever since. I always wear MCR sandals. Other than a minor ulcer on my foot, I’ve had no major issues, but my husband has got a recurring ulcer.”

“I loved that job. I learned so much, and it gave me so much confidence. I was sad when it finished. Shortly after, my son was born, so I was looking after him, but now he’s in class 2, I want to find some work again. I can’t do physical work, but I would like to work with people affected by leprosy. My son is the most important thing in my life, and his education has been supported by LEPRA for the last 3 years.”

“My advice to those newly-affected is that there’s no need to get depressed because it’s leprosy. It’s like any other general disease that is curable with medicine.”

Zaibun is 34. She 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!”. 

“I am Sultana Begum. I’m 34 and I live with my husband Sharif, 44, our two sons, 14 and 16 and our daughter, 12. All of our children are in school, and I got educated until class 7.”

“My husband used to sell kerosene, which he’s done all his life. But 3 months ago the government changed the law about individuals selling it and he’s had no work since. Our daughter is top of her class, but we’re running out of money, and my husband is saying we may have to take her out of school… it’s been distressing me a lot.”

“I got leprosy 11 years ago, some point after my daughter was born. My hands started to claw and became anaesthetic, as did my feet. I started visiting private hospitals. For 8 years we went to various places with no correct diagnosis. We spent a lot of money, between 3-4 lakh.”

“I had so many tests and took so much medicine. My father-in-law was saying we shouldn’t be spending this much, and even encouraged my husband to divorce me. They tried to manipulate him. I used to cry a lot. At one point, I felt it would be better if I just died.”

“Eventually, in 2016 I took my daughter to the hospital as she had a fever and the doctor saw my feet, and referred me to another doctor who then sent me to Nallakunta Leprosy Referral Centre. They put me on treatment which I completed in July 2017.”

“When I was first diagnosed, I was actually happy that they knew what it was and that it was curable. They reassured me and said everything would be fine. They taught me self-care. And I’ve been very careful since. I even only drink tea from cups so I don’t hold a hot glass. I still have a slight ulcer and visit the centre every two weeks. Only my husband knows that I have leprosy.”

“My husband was an alcoholic, and things weren’t good at home. His brothers weren’t willing to help him at all, so two years ago, while I was still taking MDT, I sold my gold necklace so I could pay for a liver operation for him. I’d arranged a doctor to speak to our children so we could have an intervention. Now he doesn’t have this job, I’m really worried about my daughters education. She really loves school and wants to continue her studies. I’m even willing to find a job myself.”

“My husband is reluctant to find other work, he’s only ever known how to do one thing, and he can’t do that any more. He said it’s enough that he can provide food. I get a government disability pension of 3000 INR. That’s all we live off. I’ve been getting it for 5 months. We used to have 1-2 lakhs saving, but it’s almost gone now.”

“He’s never physically abused me, but he has verbally. He’s told me to get money from my parents. I don’t want my childrens lives or studies to get affected, so I didn’t tell them I have leprosy. My husbands brothers haven’t been supportive at all. I have four brothers and two sisters. One of my sisters stays locally. When my husband used to drink, he would argue with my sisters husband. Now my sisters not allowed to visit here.”

“What would I say to someone just diagnosed with leprosy? Earlier I used to feel like dying, but once I visited NLRC, I was treated. So don’t worry, if you visit, you’ll be treated and can lead a normal life.”