“I just wanted to die” – living with leprosy in Myanmar.

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Than Lwin – © Paul Salmon

Myanmar is one of just 16 countries in the world still reporting more than 1,000 new cases of leprosy every year. Stigma and disability are still enormous problems there, as profiled in this recent Guardian article. The Leprosy Mission is working hard to transform lives there, but one of the most simple things we can do – and that you can play a part in – is treating people affected by leprosy as early as possible, curing them of the disease before disability takes hold.

Every time we meet people like Than Lwin, we remember why swift diagnosis and treatment is so vital. The 69-year-old developed leprosy about 40 years ago.

It all started with him being unable to feel his fingers;  then he began to experience loss of sensitivity on his body. Unfortunately, this led to his torso being badly burnt while he was bending over an open fire – he simply couldn’t feel what was happening. He later worked in the fields but using a scythe to cut grass meant he cut off and damaged some of his fingers and toes, leading to him becoming severely disabled.

About 21 years ago he was finally diagnosed with leprosy when a medical team visited his village. The Leprosy Mission provided him with multidrug therapy (MDT). He had lived with the illness for 19 years at that point without knowing what was wrong with him, but was finally receiving the cure.

Before his diagnosis Than Lwin said he felt like he ‘just wanted to die’. Because of his disabilities, people did not want to come near him, even crossing to the other side of the road to avoid him. For much of his life he has been isolated and lonely.

“My saddest memory is when I offered a monk some food, just like other people do,” he said.

“The monk took the food but when he thought I was not looking I saw him throw it away.”

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Than Lwin’s hands and feet. He is wearing protective footwear supplied by The Leprosy Mission – © Paul Salmon

Now that stigma in his village has been broken down thanks to The Leprosy Mission’s work, he feels happier about his life. He has gained enough confidence to start attending community meetings and finally feels included.

He is also good friends with two other men affected by leprosy and the three regard each other as ‘brothers’, supporting each other and going to social events together.

Talking about when he was first diagnosed with leprosy, he told us: “Even though there was medicine I didn’t want to take it – I just wanted to die. Since you have helped me, life is worth living again.”

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Ye Ye Shin – © Tom Bradley

Sadly, some people affected by leprosy feel less hopeful about their lives. 39-year-old Ye Ye Shin developed leprosy aged 10 but was not diagnosed until several years later. She has spent most of her life carrying the burden of stigma alongside one of her brothers, who is also affected by the disease.

“I don’t want to get married because I don’t want to bring trouble to other families,” she told us. “When two of my siblings got married their in-laws were not happy to learn that their children had married into our family.”

Ye Ye Shin’s other brother is a farmer but she does not work with him as it makes her ulcers worse. She sometimes goes to social events in her village but doesn’t venture further afield because she is worried how people will react to her.

She dreams of one day having her own business but so many things have made life tough for her – her disabilities, her family’s poverty, and the terrible stigma of leprosy.

There are many more people in Myanmar who have yet to be diagnosed with leprosy. For them, the cure can mean a life free from much of the pain suffered by people like Than Lwin and Ye Ye Shin – the stigma, the struggle to earn a living, the sadness.

Did you know that as little as £24 can cure someone of leprosy and transform their future?

How many people could you cure? Donate today and change a life forever.

Siphi and Bela. Bela is affected by leprosy and receives treatment at Naini Hospital.

Siphi and Bela’s new home – and an end to stigma

Partnership Officer Rachel Snart recently spent two weeks visiting India to see how your gifts are transforming lives there. One family she met found that for them, leprosy meant they were ostracised by loved ones. We were able to help, but stigma in the community meant further steps had to be taken to ensure a happier future. Rachel writes:

Staying at The Leprosy Mission’s Naini Hospital in Uttar Pradesh, we visited villages in the surrounding area to learn more about the impact our projects are having. Driving out there, I became acutely aware that the more remote a place is, the poorer the community.  We drove upon dusty tracks that weren’t even roads and needed to walk the last part of the journey because the car couldn’t drive over the rocky terrain.

Siphi and Bela. Bela is affected by leprosy and receives treatment at Naini Hospital.
Siphi and Bela. Bela is affected by leprosy and receives treatment at Naini Hospital.

In one village, we met Siphi. His wife, Bela, was diagnosed with leprosy a couple of years ago. They are the only family in their community who are affected by leprosy. In remote areas like this, where people don’t often know much about leprosy, people with the disease are often singled out and ostracised.

Bela’s own family stopped seeing her because of her leprosy – she wasn’t even invited to her sister’s wedding. She felt so rejected and unhappy with her lonely life. In the beginning, her sons didn’t know anything about leprosy either, so they were extremely wary and refused to sit near her a lot of the time.

Bela first started to notice she had a problem when she started to get a burning sensation in her hands. Then she gradually began to lose all feeling in them. She was worried that it would be something serious, so she visited the nearby government hospital, which diagnosed her and referred her to Naini Hospital where they knew she would get the specialist care she needed. There, she was given multidrug therapy (MDT), which cured her leprosy. The ulcers she had developed as a result of the disease were also treated.

At the time the family were living in a ramshackle hut made from sticks and cow dung. The lack of a door meant animals wandered freely through the house. It made cooking food very difficult and it didn’t help their status in the village. Already affected by leprosy stigma that meant unkind jibes from neighbours, they felt isolated and ashamed by their living conditions.

“It created so much tension within our family and relationships because we became stressed and angry at the way we were being treated and would often shout at each other,” said Bela.

“The state of the shack only made things worse. In the rainy season, the water would come pouring in and ruin our clothes and beds. Food would spoil and we would have to keep repairing the roof.”

Siphi with his sons in their new home.
Siphi with his sons.

As if this wasn’t bad enough, when the effects of Bela’s leprosy became visible, the couple made a very tough decision which might be hard to understand. They agreed that Bela would live in the small shed where they dried and stored the cow dung they use as fuel. She ate with her own separate set of utensils, and her children wouldn’t even use the same bar of soap as their mother, so deep was their fear of leprosy.

The decision was made to protect the whole family from the judgement from the other villagers. It broke my heart to hear about the sacrifice Bela made for her family.

As Leprosy Mission staff assessed Bela’s situation, they decided the family would benefit from a new house. But it was on a community officer’s follow-up visit that we became aware of the heartbreaking decision the family had made. As a result we set up an awareness-raising programme in the village to try and educate the community about the realities of leprosy.

Siphi said that over time, people have become kinder towards the family as they have begun to understand more about leprosy. The couple decided it was now safe for Bela to live with the rest of the family again, in their new and improved home.

The bricks for Bela and Siphi’s cost around 7,000 rupees (Rs), which is around £70. Bags of cement are 300Rs each which is about £3. They used 55 bags which comes to around 16,500Rs (approximately £165). All other materials such as roofing, metal bars, wooden structures, doors and windows brought the total to 125,000Rs, or roughly £1,300. Siphi is a builder, and his sons and some neighbours helped him construct the house, meaning they did not have to pay for labour. It struck me how much of ‘drop in the ocean’ this is compared to a house here in England.

Siphi stands outside his new home
Siphi stands outside his new home

Siphi and Bela were thrilled with their new home.

“There is very little tension in our family now,” said Bela. “People will come and spend time in our home and I can start trying to do housework again. My children will sit next to me and I can be close with my family once again. I have my family back.”

It was so wonderful to see this family accepted by their community, full of pride and hopeful about their future. It really brought home to me why the awareness-raising work done in India is so vital. There are still so many negative attitudes towards leprosy, and these ingrained beliefs take time to change. With your help, this is happening – and changing the lives of people like Siphi and Bela.

Stories from Nepal: Pavitra

The final installment of Partnership Manager Louise Timmins’s blogs from Nepal, where she visited Anandaban Hospital last month, meeting some of the people whose lives have been devastated by the earthquakes. Towards the end of her visit she met Pavitra, who benefited from a new house thanks to The Leprosy Mission last year.

Pavitra at the Self Care Unit at Anandaban Hospital.
Pavitra at the Self Care Unit at Anandaban Hospital.

The Self Care Unit at Anandaban Hospital is where patients affected by leprosy learn how to soak hands and feet which have lost feeling because of disease, remove dead skin and moisturise with oil. This is so important because soaked, supple skin is less likely to crack and injure. Injuries can turn in to horrendous ulcers which take months to heal. Sadly in some cases, the ulcers become so infected that amputation is the only option.

As I walked down the 360 steps from the hospital to the Self Care Unit, I could see eight or nine patients sitting and chatting together. It is fantastic that they can share experiences and encourage one another here. Only someone who has experienced leprosy first hand can really understand the horrors of the disease.

Pavitra looks on as Self Care Unit manager Kassi tends to her feet.
Pavitra looks on as Self Care Unit manager Kassi tends to her feet.

Pavitra had just soaked her feet and was having the dead skin removed by Kassi, who is also affected by leprosy and manages the Self Care Unit. We started chatting and Pavitra told me her story:

“I was sixteen when I first noticed I was losing feeling in my hands,” she said. “It was very strange and I didn’t understand what was happening. I was scared so I just ignored it and tried to hide what was happening from my family and friends.

“Luckily my parents found a husband for me and we got married. I kept the secret of my illness from my husband, but when we had a son a year later, I couldn’t hide it anymore. By this point my hands were almost useless; my fingers wouldn’t straighten and I didn’t feel it when my son grasped them. I kept burning myself when preparing meals. It was terrible. I felt so sad all the time.

“My husband was so angry – he realised I had leprosy. He threw me and our son out of the house. I was disgraced – I am from a low caste, and with leprosy too I knew I didn’t have much of a future to look forward to.

“Thankfully my mother took us in. I’m an only child and she was so good to me.

“I now live with my son and his family – I have five grandchildren so it’s a busy household. My son also ran a tailoring business from the house until recently.”

Despite the support of her family, Pavitra has faced new challenges following the earthquake at the end of April.

“When the earthquake came we lost everything,” she told me. “Thankfully no-one apart from my daughter-in-law was inside the house – she jumped out of the upstairs window to safety. Our home is gone and our income from my son’s business has gone. We are desperate.

“I feel very sad about losing my home; it was only built by The Leprosy Mission last year. I was so excited when we moved in. I’d never had a toilet in 57 years – it was wonderful! Now I wonder what will happen to us.

“We’re living in a tent; it’s really hard to manage in such a small space, especially when it’s raining.

“I am thankful for The Leprosy Mission; they treat me like family when I am here. It’s almost like coming home. I hope that God will provide me with a house for my family again. I don’t know how we will manage otherwise.”

The Leprosy Mission Nepal is currently looking at plans to start rebuilding homes destroyed by the earthquake early next year. We value your prayers as we do so and hope we will be able to partner with other organisations in Nepal to transform the desperate situations of people like Pavitra.