Why U Soe Win inspires me

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U Soe Win

James Pender, Programmes and Advocacy Officer (Asia), first met U Soe Win on a visit to Myanmar in 2016. Ever since, he’s been inspired by the way he works to effect change in his community.

We all have people we admire, whether they are well-known figures from the past or individuals from the present. They are important in our lives as they inspire us to keep going, overcome hurdles and press on towards the vision God has given us.

The person that has inspired me most since I joined The Leprosy Mission five years ago is U Soe Win. This is partly because I have got to know him a little better than some of the other people I have met overseas, having met him on three visits to Myanmar. I also had the chance to spend a week with him at a meeting recently. There’s a picture of him in the entrance area of our office in Peterborough, so I’m reminded of him every day when I come to work.

U Soe Win is a man who is very visibly disabled as a result of leprosy. He suffered terribly both from the disease and from the stigma associated with leprosy after being diagnosed in 1983. As a result, for many years he isolated himself, locking himself away at home to avoid the pain of people treating him unkindly when they saw his leprosy-affected hands and nose.

U Soe Win is not an inspiration to me because he has overcome social prejudices and now lives a ‘normal’ life in his village. Too often, it can seem patronising when disabled people are praised for ‘being able to cope with living a normal life’. Why shouldn’t they have that chance?

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With other members of the local disabled people’s organisation

No, I admire him because he is an exceptional individual by anyone’s standards. He’s an effective leader, heading up the disabled people’s organisation in his village that has now expanded and set up groups in neighbouring areas. The group has successfully petitioned the local council to make public facilities more accessible – for example, installing a ramp at the local school, which not only helps disabled children but also enables disabled adults to vote, as the school is used as a polling centre during elections.

U Soe Win is also a champion for the rights of others. When a young woman in his village was raped, he helped find the perpetrator and when the case stalled, he personally met with the judge involved to see that it progressed to a regional court, ensuring that the man responsible was jailed.

And his influence now extends beyond his local area. His hard work on behalf of his community, along with his positive attitude, has meant that U Soe Win has now had the opportunity to attend national and international conferences, speaking on behalf of people affected by leprosy.

It has been wonderful to see U Soe Win use his skills to become such an advocate for so many and I’m privileged to know him.

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Once abandoned, now thriving, Alina has found new hope at Anandaban Hospital

Alina, a patient at Anandaban Hospital in Nepal
Alina, a patient at Anandaban Hospital in Nepal

When you first meet Alina she seems just like any other 13-year-old girl, but her hands tell a different story.

She developed signs of leprosy at 10 years old, but was not given the correct treatment. This meant that she was not cured of the disease and that it began to affect her more severely, leading to clawed hands. The lack of sensation in her hands had led to Alina accidentally burning herself, causing infection and permanently damaged fingers.

Leprosy had also started to affect Alina’s eyes, putting her at risk of blindness as she became unable to blink away dust and dirt.

But her greatest pain, we found out, comes from being abandoned by her father. He left the family as soon as he found out she had leprosy and has not returned. Her mother works abroad and so Alina is cared for by her grandparents, the only other family she has.

Alina’s story of being rejected by someone so close to her is not unusual. There is a lot of stigma surrounding leprosy in Nepal and deep-seated fear of the disease means that so many patients at Anandaban Hospital, where Alina is receiving treatment, have had similar experiences.

Alina is having physiotherapy to help her regain use of her hands following reconstructive surgery.
Alina is having physiotherapy to help her regain use of her hands following reconstructive surgery.

The cure for leprosy, surgery and physiotherapy can provide physical healing and thanks to you, Alina has received the treatment she needs at Anandaban, undergoing surgery on her hands and eyes. But what’s just as important for people like Alina is experiencing emotional healing. While at the hospital, she has received loving care and support that has deeply touched her.

The staff there told us that Alina reminds them of a lotus flower. The flowers, native to Nepal, grow out of muddy waters, rising above the surface to bloom. Alina is determined to thrive, thanks to your generosity and the staff at Anandaban. Since the earthquake in Nepal, in 2015, patient numbers at the hospital have doubled to 40,000 a year, meaning that they are incredibly busy. But their passion for transforming lives remains.

“It is a real joy to see the happiness in the faces of leprosy patients after surgery,” said Dr Indra Napit, Medical Director.

A busy ward at Anandaban Hospital
A busy ward at Anandaban Hospital

There are many more people just like Alina who need help today. In 2017 there were more than 3,000 new cases of leprosy diagnosed in Nepal. At Anandaban, the country’s flagship leprosy hospital, people have the chance of regaining their mobility, freedom and dignity – and you have an amazing opportunity to help them.

Thanks to UK Aid Match, the UK government is doubling your gifts made to our Heal Nepal campaign before 27 April 2019. So a gift from you of £10 means that £20 will go towards helping to find, cure and heal people like Alina. This is a rare opportunity to make a huge difference to people affected by leprosy. Every gift from you will mean that more people can look forward to a more positive future thanks to dedicated staff at Anandaban Hospital.

Click here to give your gift, that will be doubled until 27 April. 

 

Success for leprosy champion Sharidah as village gains a water pipeline

Sharidah is a leprosy champion for her community and has recently played an important role in securing a big change for their lives.
Sharidah is a leprosy champion for her community and has recently played an important role in securing a big change for their lives. Photo: Hassan Nezamian

Your gifts to the CREATE appeal are training people affected by leprosy to become ‘champions’ in their communities who can effectively challenge discrimination and fight for change. Read on to learn more about Sharidah, one of our first leprosy champions, already making a difference in her village.

60-year-old Sharidah lives in a leprosy community in Chhattisgarh state, close to The Leprosy Mission’s Champa Hospital. She’s been living there since she felt forced out of village where she grew up, when her husband rejected her because of her leprosy. Sharidah had been suffering the effects of the disease for some time, but it was when they became visible, with damage to her hands and feet, that he threw her out and kept her from seeing their children.

Thankfully now they’re grown up, her children ignore the negative attitudes surrounding leprosy and often come to visit, making sure Sharidah is part of her grandchildren’s lives. For some years now she’s been part of a self-help group that has enabled her to set up a small grocery store and earn a regular income, but sadly, the stigma of leprosy still remains. Sometimes people don’t want to shop there because of her disabled hands and feet, so her customers are mainly other people affected by leprosy.

Sharidah in her shop
Sharidah in her shop. Photo: Hassan Nezamian

When we first met Sharidah, we soon realised she had a real passion for creating change in her community. She was keen to improve life for other people affected by leprosy because, as she told us, she wants to ‘give something back’ when The Leprosy Mission has done so much to help her in the past.

Sharidah was excited to learn about the ways the CREATE project would be working in her local area. The aim of CREATE is to combat stigma and discrimination and improve life chances for people affected by leprosy. Part of this involves training up people to become ‘leprosy champions’ who can become advocates for those around them. It was clear from talking to Sharidah that she would be an ideal leprosy champion for the village – and she was more than happy to help.

When we visited the village again recently, it was amazing to see first-hand the difference Sharidah has been helping to make. Her enthusiasm to see change happen means that this year, the community will have a piped water supply for the first time.

Around nine years ago, a new water tower was built on the edge of the community. It was built to supply the whole of the surrounding area, but the leprosy village was not included in this, leaving residents without a pipeline. Sharidah’s self-help group wrote to different local government offices seeking answers but received no reply.

Eventually, they were promised that work on a connecting pipeline would soon start, but once the work had started it was soon put on hold. Sharidah – now trained as a leprosy champion – and her friends organised protests at the water tower and got in contact with authorities once more to explain why clean water is something everyone should have access to and why leprosy communities should not be forgotten about.

Before long, they saw success. Work on the pipeline started up again and Sharidah told us she was confident that it would be completed this time. If not, she already has plans for a new campaign! When finished, the pipeline will bring water to a communal tap in the village and eventually, will pipe water into individual homes.

Sharidah’s success in making change for people affected by leprosy shows just how much of a difference leprosy champions have the potential to make – and what can be achieved by people standing on behalf of their communities against discrimination. Thanks to you, many more people like Sharidah will be trained as leprosy champions – and many more lives will change as a result.

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Sharidah with CREATE project staff