Nsimbu, 60, Kuakua

Nsimbu lives with his wife. They have 6 children, all of whom are grown up and living elsewhere. He’s a farmer and been educated to class 2.

“Five years ago I started to get wounds on my legs. I was also getting feverish around this time, though I thought that was due to malaria. I had patches covering my body.” His wife agrees with him: “In those two years I saw so many wounds, and he always had a fever.”

“I couldn’t work hard in this time, I couldn’t work fast. My wife was doing everything. The fever incapacitated me constantly.”

It was his wife who eventually told Mathos at the TLM apprentices’ workshop, and he referred him to hospital. He was diagnosed three years ago with leprosy.

“When I was diagnosed I was depressed and distraught. I was ready to drink battery acid and end my life. But the doctors told me I’d be ok and gave me hope, and that’s why I’m alive.”

“When I’d completed the MDT, I observed changes in my legs. Mathos provided me with bandages (from TLM), and gave me self-care training. I still do self-care every morning and evening.”

Nsimbu still has anaesthia on his feet and legs, though at first says he has full sensation. He clearly doesn’t, but some sensation has come back.

“I still get tired doing farm work. But I’m happy now. I accept how I am, because I’ve received a lot of advice from doctors and community leaders. Life is still hard, but I have no worries.”

“I’m very grateful to Father Placide and TLM Congo. Without them I wouldn’t be alive.”

Nsimbu has received some money for welfare. He’s used it to buy food, as well as pay some people to farm his land when he’s unable.

Thank you to TLM for contributing this story for #WorldLeprosyDay!

Remy , 24. Leprosy Settlement, Kongo Central

Remy lives in a small leprosy settlement of just a few houses, built by the government in the 1980s for those affected by leprosy. It is not too far from an old hospital in the forest outside of a village, and the settlement was intended for those that needed to stay short term while taking MDT.

Families now live here permanently, and TLM has since built a well here, and helps with wound dressings etc. Remy was born here.

He lives with his parents and two siblings. There are 7 brothers and sisters in total, though 4 live away from home. He’s the second youngest. His father, Fabien (also pictured), 70 was also affected by leprosy.

He’s finished high school, and does various jobs at home – farming cassava, palm oil, and honey. Beekeeping was introduced in this small village in 2011 by TLM, and they are known for selling honey. “I have qualifications, but to start off jobs you need money to pay bribes.”

Remy has done technical studies in electronics, but wasn’t able to touch things in the workshop because of weakness in his hands. It was in 2013 that he got the first symptoms, while studying at secondary school.

Since his family were very familiar with leprosy, he was taken straight to the local hospital and diagnosed. “As I was born here, I know the disadvantage of leprosy, and I lost hope. I thought with this, I’ll lose sensitivity and not be able to do anything with my life. I was fearful that it would eventually kill me.” He no longer thinks like this about leprosy, having been educated better.

“At school none of my classmates would sit near me. I was studying in the nearby town of Nsioni, and it was difficult for me to continue going to school at this time.”

“When I started taking MDT my urine became red, and my skin went darker and dried up. But after two months my hands became strong again. They’re still strong now.”

Remy does have anaesthesia on his feet, and so is vulnerable to wounds. He’s had ulcers on his feet before and felt very ashamed and embarrassed because of this. “It’s another barrier to me getting a job.” He also has anaesthesia on his hands, so has to be particularly careful there too.

Two of his brothers, who don’t live here currently are also affected – one in Lukula, farming, and another in the nearby Angolan state of Cabinda.

TLM provided Remy and his father Fabien with beekeeping equipment, in particular the protective jacket, hat and gloves. There are 29 hives in total in the community. Fabien was trained by TLM in beekeeping in 2017. They sell the honey for $5 a litre. I bought a bottle and it is delicious – strong and earthy in flavour!

Thank you to TLM for contributing this story for #WorldLeprosyDay!

Joseph, 44, Lukula

Joseph is renting a tiny room from a landlady. We sit next door in her house as there’s space there.

His father is dead and his mother is mentally unwell. “I studied in school until class 2, but then dropped out when my father died.” Joseph was married, but when his wife found out he had leprosy she left him. He has three children. One of them, 16 is here with him. He was in school until class 3, but then left because the family lacked money. The kids all stopped school when Joseph got leprosy.

“I make money with difficulty. Friends sometimes help… this landlady has been good to me.”

Joseph’s hands and feet are quite badly affected by anaethesia, and manual work is difficult and tiring. Before he got leprosy he was a farm labourer.

“I got symptoms about 4 years ago. I was getting blisters on my hands. It wasn’t entirely painless. I went to see a traditional doctor who applied leaves to the various ulcers and wounds I had. I tried that for 3 years. My feet got worse in this time, and my nose collapsed too. I gave so much money to him. Before all of this I was a good farmer. But I’ve not been able to do anything. I’m starting to feel a bit better now.”

Joseph was eventually diagnosed and completed MDT 4 months ago.

“My wife likes money, and when I was earning we had a good relationship. But when I got sick, and got ulcers, I couldn’t work. There was no household conflict. She just left and went away. Apparently, she has remarried.”

His wife lives in Congo Brazzaville. He hasn’t seen her since she left. She has two of his kids with him. “I still speak to them by phone.” Joseph used to live there too, and came here to Lukula because he heard he may be able to get treated here.

“In the day I mainly just sleep at home, waiting for my wounds to heal. With my feet like this, what can I do? My landlady is a good woman. If I have money for rent I give it to her.”

Joseph’s younger brother is training his son to repair motorbikes.

“I feel very bad. It’s a hard life that I’m living. I didn’t go to school, and my children are also not going to school. I don’t have a job.”

Joseph does self-care.

I ask him what he hopes he could do. “I’d like to sell I think. Maybe have a shop. I have no feeling in my hands and feet, and I get cramps. I’m living with difficulty. If I have financial help I want to start a business selling food.”

Thank you to TLM for contributing this story for #WorldLeprosyDay!

Asi *, 15. Santé Centre Rural de Lukula

Asi * is here with her son who is 17 months. She’s still taking MDT for leprosy – 5 months out of 12 so far.

She completed class 6, but left in 2019 when she got pregnant. She lives with her mum Mbumbi and her little sister. Her father died when she was small.

In 2018 she saw patches on her face. She was spotted by a man doing active case-finding for leprosy in her area, a program initiated by TLM and the local health zone. The PLUBL project, funded by TLM Switzerland.

She was immediately put on MDT, and has had no other leprosy-related complications. She walks here once a month from Lumba. It takes her about 2 hours, and she carries her son the whole way.

Asi * now sells cassava leaves and wood and uses the income to take care of her child at home. “I get very sad. I have no husband, and it’s just me to take care of myself. My mum is worried and stressed all the time, and so I am too.”

“I just want to go back to school.” Asi * starts crying, while holding her son to her at the same time. It’s a deeply sad situation, that at least is no longer being exacerbated by leprosy.

“When I got it my mum was very worried. People used to tease me about my patches. When the community would all dress up on Sundays for church the ladies used to tease me about what skin lightening cream I was using.”

Asi ’s mother rents a house, but they struggle to pay the rent. “I was wondering if there was someone who could help me.” TLM is no longer doing income generating activities in the area sadly.

Asi ’s mother comes to the clinic shortly after the interview. She has concern etched onto her face. “The main problem is I… we want her to go back to school. But it’s difficult to pay the bills now too. So I sell peanuts.” Mbumbi makes around €0.40 profit per day. Rent is about €4.00 a month.

They are both very grateful leprosy is not a big problem in their life. Mbumbi says “I’m very thankful to the TLM staff and doctors who have helped diagnose my daughter, and provided the medicine free of charge.”

We realise it is likely a sensitive subject, but tentatively ask about her son. She doesn’t know where the father is. She used to see him on the way to and from school. They spoke quite a bit, and she knew he was an orphan. We don’t ask, and it’s difficult to tell how willing she was – of course being underage it’s not consensual. She gave birth by Caesarian aged 14. The father was 22 at the time.

Thank you to TLM for contributing this story for #WorldLeprosyDay!

Boishaki and her father

Boishaki is 13. Her father, Ram Babu, sat with us as we spoke to her. He was clearly worried about the impact of leprosy on her life. The family live in a very simple house – one big room with mud walls and corrugated metal roof, like most of the houses in the area.

She has one brother who is eight years old. Her mother and father also have leprosy – both are tea pickers

Boishaki has several white patches on her face. It started as only two patches but more keep appearing and as a young teenager she’s very conscious of this. She seemed uncomfortable at times and often looked down as we talked to her.

She was diagnosed with leprosy six months ago by TLM health workers who came to her home doing contact tracing of a known leprosy case in her community. Jiptha told us there are around 80 new cases in this very small area – leprosy is spreading fast.

She was very sad when she found out she had leprosy and she stopped going to school for a month as she wanted to hide the patches on her face. She is still trying to hide the fact she has leprosy from her school friends so she’s calling it a ‘skin disease’.

When asked how she feels she said she is scared she is getting more patches on her face and worried about what people will think.

She was diagnosed as a PB case and given MDT for 6 months but more patches are appearing – it’s likely thought that she is probably actually an MB case and if so she will need a longer course of Multidrug therapy. She has no other visible symptoms of leprosy.

She likes drawing and Bengali at school – said she might want to be an artist.

She also likes Kabadi and playing football. She supports some local Bangladeshi teams.

Her father worries that if people know she has leprosy she may not be able to go to school. She goes to a private school at the moment. The family live outside the tea gardens so there is stigma around leprosy in the community here [usually tea estates provide people with accommodation and within these communities there are low levels of stigma].

Both Boishaki and her father seemed very anxious about the future and the impact of leprosy on their family.

Thank you to TLM for contributing this story for #WorldLeprosyDay!

Dhanmati Yadav

Dhanmati Yadav, a 71-year-old woman from Tarkulla, Om Satya Rural Municipality of Rupandehi, was diagnosed with leprosy after developing skin patches without sensation of touch. Despite taking other medications for over a year, her skin condition did not improve. Upon referral to the Butwal hospital and a skin smear test, she was confirmed to have leprosy. However, after a year of continuous Multi Drug Therapy medication, Dhanmati has been completely cured.
Dhanmati’s case is unique because, at her age, she did not show any fear or panic when diagnosed with leprosy. Instead, she was determined to follow her medication regimen strictly, with the help of her granddaughter-in-law’s reminders. She credits her family’s support and love for her speedy recovery.

Living in a joint family with three sons and their families, Dhanmati is a matriarch who enjoys spending time with her great-granddaughters and watching hindi movies on television. Her youngest son serves in a security force and is stationed in Surkhet, some 300 kms away. Dhanmati is the happiest when he comes back for his holidays. Despite her age and medical condition, she remains active and religiously performs her regular Pujas and offerings. She is proud of having visited Pashupatinath temple, one of the most revered Hindu pilgrimages in Kathmandu seven times already and wishes to visit again.

Although Dhanmati suffers from joint ache and pain in her knees, she continues to enjoy spending little time with the water buffaloes that her family rears in a shed behind their ancestoral home. Dhanmati’s family owns 4 kathas of land, which has been divided among her sons who continue the family’s occupation of agriculture. When feeling well, she visits her other son who lives in another village nearby on foot.

Dhanmati’s family members are vigilant about any signs of leprosy and have any skin patches or blisters checked up for signs of the disease whenever possible. She now has to have medicines for high blood pressure daily though. The family is also grateful that Dhanmati was diagnosed early and recovered quickly. Her family’s care and affection for her have also helped her to overcome the difficulties of aging. Her granddaughters would take in turn to apply oil massage on her knees and feet whenever she has pain and sore limbs. Dhanmati’s story serves as a testament to the importance of early diagnosis, proper medication, and the love and support of family in overcoming any medical condition, including leprosy.

Thank you to TLM for contributing this story for #WorldLeprosyDay!

Leprosy in Sindh, Pakistan

In the Pakistani province of Sindh, it is not often that medical personnel are in the area – especially not in the more remote villages. And this despite the fact that Sindh is a highly endemic area as far as leprosy is concerned. So, when a medical delegation, accompanied by DAHW Global Health Advisor Anil Fastenau among others, visited a small village in the province, word quickly spread among the residents – and up to a hundred people gathered to ask for medical advice.

The team examined around forty of them more closely, many of them children. One teenage boy was diagnosed with leprosy on the spot. Treatment was started immediately, and, with a bit of luck, the impairments are reversible.

However, the team was particularly impressed by a twelve-year-old girl, the boy’s cousin. She had heard some health education messages some time ago and realized that she had a skin patch with loss of sensation, which she had tested herself. She immediately went to a clinic, was diagnosed, received treatment, and will now have no disabilities.

So, the delegation realized: leprosy exists in this village. For this reason, certain contact persons were offered prophylaxis, which was very gladly accepted. This significantly reduced the risk of these people also contracting the disease. But the experience of this visit also shows that the messages about leprosy are getting through to the people. They are effective and they motivate those affected to seek medical aid. And in this way – with the support of our donors – we can succeed in eliminating leprosy throughout the country and to reach our goal of zero leprosy.

Thank you to DAHW for contributing this story for #WorldLeprosyDay!

Patili Maya – Ranichur Self-Help Group

Patili Maya lives in a small village in rural Nepal. A few years ago, Patili Maya started to notice a loss of feeling in her feet. They developed wounds that wouldn’t heal. Her hands slowly became paralyzed. 

Eventually she was diagnosed with leprosy and received Multi-Drug Therapy. But she was left with the consequences of late diagnosis and treatment: extensive nerve damage, paralyzed hands, damaged feet. And, the terrible stigma. Patili Maya was reviled and rejected by her community. They were afraid of her. They hated her. 

A long, stony path leads from Patili Maya’s village to the main road. This path provides the only access between the village and the outside world. When Patili Maya would walk up that path, people would hurl insults at her; they tried to block her way, to stop her from even using the path. She says, “People were very cruel and treated me with such hostility, but I was determined to use the path, determined that one day people would understand that I am a woman of value.”

One day, Patili Maya was invited to join a self-help group. Our partner, Lalgadh Leprosy Hospital, has helped establish self-help groups so people affected by leprosy can have an opportunity to improve their livelihoods. 

But the term “self-help” doesn’t fully reflect what Patili Maya’s group is truly about. Even though the members are poor and suffer from various disabilities, they are so much more than a group of people committed to pursuing self-interest. 

Patili Maya’s group decided they wanted to undertake a project that would show that they cared for the well-being of the whole community. The same community that had shunned them. 

After some discussion among the 24 members of the self-help group, a decision was reached. This group of poor, disabled and rejected people decided to improve the path to their village. The same stony path along which Patili Maya had struggled, suffering abuse from her community.

With picks and shovels, the self-help group worked to transform that stony path into a road; a road so that children could get to school more easily; a road so that villagers could get to the health post.  

But that road not only gave the community better access to key services, it gave Patili Maya’s group access to the hearts and minds of the community. 

No longer despised and rejected, now the members of the self-help group have become valued and respected members of the community.

With a huge smile on her face, Patili Maya says: “through the rest of my life, I will be part of this group because this is where love is, here is where I find peace and joy. I know my home is in Heaven but until I reach that home I will find my happiness in this group.”

Thank you to ALM for contributing this story for #WorldLeprosyDay!

Sangeeta’s story: Battling leprosy stigma in Nepal

“I am still alive.”

Today, Sangeeta gives thanks for her life, despite navigating the terrible effects of leprosy and crushing stigma from her family and community.

Sangeeta is a member of Nepal’s Sada caste, who are frequently outcasts in their communities. Her husband and father-in-law spent much of the family’s income on alcohol, so Sangeeta worked as a farm laborer to help support her children.

When she first visited Lalgadh Leprosy Hospital and Services Center in 2020 for ulcer treatment, Sangeeta stayed for a whole month to get the care she needed. Years before, she didn’t finish a full course of the MDT drugs that cure leprosy. As a result, Sangeeta had numbness and disabilities in her hands and feet, as well as problems with her eyes. Despite these hardships, Sangeeta was thrilled to return to her children after the ulcer healed.

But conditions only worsened for Sangeeta and her family.

In 2022, Sangeeta developed another ulcer on her right foot. It looked and smelled so bad that the community drove her out of the village, down to the river where the dead are cremated. The villagers urged Sangeeta’s husband to poison her, then punished him when he didn’t. Abandoned by the village and her husband, Sangeeta nearly starved, but managed to escape and make her way back to Lalgadh.

This time, Sangeeta stayed at Lalgadh much longer, recovering from her physical and emotional trauma. Although her eldest daughter accompanied her, she went months without seeing her other children. Eventually, her village chased out the whole family because of their ties to Sangeeta, and they visited her at Lalgadh.

“I was happy because I was able to see my family,” Sangeeta explained. “I hadn’t seen them in about two months, so I was overjoyed.”

The team at Lalgadh recognized that Sangeeta needed more than a medical intervention to make a lasting difference in her life. After her family returned home, two of Lalgadh’s community development staff accompanied Sangeeta on a visit to her village.

The situation of Sangeeta’s family was distressing: a small, damaged house, no money for food, and the family banned from using the public water tap. Still, Lalgadh’s staff knew these issues were only symptoms of the larger problem: they spent time educating the village about the causes of leprosy and the importance of their participation in Sangeeta’s rehabilitation. This education will be the foundation for Sangeeta to build a life where she is accepted, not ostracized the way she was in the past.

Through thousands of stories like Sangeeta’s, Lalgadh Hospital demonstrates what a commitment to end leprosy means: not just medicine and treatment, but restoration to a whole and healthy life.

Thank you to ALM for contributing this story for #WorldLeprosyDay!