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. 

 

Dr Helen Roberts speaks with Rajeev

For Rajeev, the cure for leprosy is a gift more precious than gold

Lizzy Standbrook recently accompanied a medical outreach team to a remote area of West Bengal, India, on a mission to find and help people who would otherwise have no access to medical care.

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Docking at one of the remote villages in West Bengal where medical outreach teams travel to find new cases of leprosy

On the day we met Rajeev, it took nearly all day for the outreach team from Premananda Hospital to travel by train, jeep and boat from Kolkata to his village.

Leprosy hides in remote villages like the one where Rajeev lives. There is no medical care readily available and people live a hand to mouth existence. For most of them, affording the journey to a clinic or hospital further afield is unthinkable. There is little awareness of the symptoms of leprosy. And so cases of the disease often go undetected, with devastating effects.

My overwhelming feeling is how exhausting running these clinics must be for Dr Helen Roberts, Superintendent at Premananda, and her team. In addition to treating the hundreds of people turning up every day, there is all the packing and unpacking, carrying cases of supplies, lifting them in and out of cars and boats. That day some of this was done as torrential rain fell and thunder crashed overhead.

Setting up the outreach clinic in Rajeev's village
Setting up the outreach clinic in Rajeev’s village

Opening up their outreach clinic in a disused school building, Dr Helen and her colleagues set up tables and unpacked boxes of medication. One desk for eye problems, another for diabetes cases, a big problem in the region – and a desk for skin issues, where people with suspected leprosy would be seen. A crowd quickly began to gather and I soon understood why – no doctor had visited the village for ten years.

Incredibly, 300 people came to the clinic that day – more than we had ever expected. People queued around the room. Suddenly, we were called over to Dr Helen’s table. She was examining the torso of a man – Rajeev – who had arrived with his 12-year-old daughter. Straight away I noticed the tell-tale patch of lighter skin covering some of his chin. Dr Helen pointed out lesions on his arms and showed us that Rajeev’s daughter had them too.

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Dr Helen Roberts speaks with Rajeev

Rajeev told us that he didn’t live far from the clinic and that he was worried about his wife and other children. Could they all have leprosy? There is certainly a risk to other members of a family once one member has the disease. Dr Helen decided that we would visit their home once the clinic was finished so she could examine everyone. If she had reason to believe that Rajeev’s wife and children had leprosy, the whole family would be taken back to Premananda Hospital for treatment.

Rajeev could never have afforded the cost of the journey to hospital in Kolkata and this is why so many cases of leprosy  never receive the treatment they desperately need to prevent disability. But thanks to the dedication and servant hearts of Dr Helen and her team, people like Rajeev receive the precious gift of the cure, stopping leprosy from ravaging their bodies.

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Dr Helen examines one of Rajeev’s daughters at the family’s home

They are so committed, going where no other medical professionals will go, caring for people who are marginalised and often so stigmatised due to the prejudice surrounding leprosy. For people like Rajeev, they are a lifeline – and I was in awe of how far they would go to make a difference.

This Christmas, support Dr Helen and her team as they reach more people like Rajeev with an incredible gift. A gift from you of £24 could find and cure someone before leprosy can do its worst, changing their life forever. Please help today.