Everyone has the right to be heard: Priya’s story

Priya stands outside her home
Priya stands outside her home

Stuart Towell reflects on a recent visit to Sri Lanka and an encounter that will stay with him forever.

Having visited Sri Lanka this summer, it conjures up vivid memories for me of the hot and humid weather and amazing food I tried on my trip. But what stands out for me the most is the dedication of the staff I met and their work towards an end to leprosy.

As there are no Leprosy Mission hospitals in Sri Lanka, Rev Joshua, Deborah and the rest of the team work tirelessly and selflessly in local communities with one mission in mind –  to find, cure and heal people affected by leprosy.

Many people in Sri Lanka know very little about leprosy or its symptoms, but they are all too aware of the effects it has on the body. There is a lot of fear and stigma surrounding the physical affects of leprosy, so much so that many affected by the disease are rejected by loved ones and forced out of their communities. It is for this reason that many people with leprosy are left afraid and isolated.

I remember the day we met Priya. We got up early to travel to her home with Deborah and Rev Joshua. As we walked through a makeshift gate I was immediately struck by how this place did not feel like a home. As I looked around, I realised just how vulnerable Priya is. A few pieces of wood and wire were twisted together to make a fence. It is though she is on her own in her village, her home set apart from the others.

It felt quite lonely and isolating for her and as we began to talk with Priya, it was evident that she is at risk from so many things. Others can see her vulnerability and she explained that she worries about the danger posed by thieves and sexual violence. She and her children are also at risk from snakes that inhabit the area.

Priya shared with us how her small hut cannot withstand the weather during the monsoon season. Often in the middle of the night she has to huddle around her bed with her children, unable to sleep with water running into the hut. I keep coming back to the way she described her life there:

“This is how I live – we manage.”

Deborah examines Priya's arm
Deborah examines Priya’s arm

Deborah checked Priya for signs of leprosy and soon realised she had lost sensation in her hands and legs, meaning she cannot work and struggles to do everyday tasks like cooking safely. For so long, Priya has felt as if people do not care about her. It was heartbreaking to hear her say that she feels her voice goes unheard. Everyone has the right to be heard.

Meeting Priya really highlighted why the work of the team in Sri Lanka is so vital. She will now be cured of leprosy. but for people like her, their journey doesn’t end there. Dedicated staff like Deborah and Joshua provide essential self-care training to prevent further damage and disability. They also provide leprosy education and awareness training to help communities welcome people affected by leprosy and combat prejudice.

For me, Priya’s story will be one I remember when I think back on my trip to Sri Lanka. I hope her life will be transformed and that more people like her will get the care they need, helping to ensure a better future for them and that their voices are heard.

Today, you can help someone like Priya. It’s vital that as many people as possible get the chance to be cured of leprosy and find healing. You can be part of this by donating today – and your gift will provide two life-changing things – the cure for leprosy and the promise of ongoing care and support.

Images: Ruth Towell

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Why U Soe Win inspires me

RS6089_Myo Chaung Village SHG_JSP5-lpr
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?

Myo Chaung Village SHG_JSP5-lpr
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.

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.