New hope and new purpose: Kanagarasa’s story

Kanagarasa, from Sri Lanka, has lived with the effects of leprosy for many years.
Kanagarasa, from Sri Lanka, has lived with the effects of leprosy for many years. Photo: Ruth Towell/Leprosy Mission

As a young man, Kanagarasa considered himself very fortunate, happily married with two sons and working as a fisherman in northern Sri Lanka. But everything changed for them in the 1980s when civil war forced the family to leave everything behind. Displaced and moving between refugee camps, they lost their livestock and possessions – yet this only marked the beginning of a time full of hardship for Kanagarasa.

While living in one of the camps, he started to notice strange patches on his skin and swelling in his arms and legs. But Kanagarasa’s concern for his health was soon eclipsed by the death of one of his sons. As the family dealt with their grief, Kanagarasa and his wife realised that the symptoms he was experiencing could be signs of leprosy. The stigma of the disease was so great that she left her husband, taking their surviving son with her.

Some time afterwards, Kanagarasa heard that his other son had also died. In such a short time, he had lost everything he had known and was facing the consequences of leprosy. It’s difficult to imagine just how devastated he must have felt.

“It was hard to understand why God would give me these circumstances,” he said.

In the years that followed, Kanagarasa’s hands began to claw; he lost sensation in his feet and developed foot drop, then ulcers. It was at this point – in 2013 – that he finally sought treatment, having avoided it for so long because of the prejudice surrounding a leprosy diagnosis. Thankfully, receiving the cure meant that Kanagarasa’s leprosy would no longer progress, but delayed treatment coupled with the many challenges he had faced over the years meant he needed lasting support.

Thanks to you, he’s received self-care training so he can prevent his hands and feet getting injured, as well as a new well and everything he needs to grow nutritious food.

“Without this help, I would not be here,” he said. “Now I feel I can live in this world.”

Kanagarasa at a meeting of the Leprosy People's Forum for Change
Kanagarasa at a meeting of the Leprosy People’s Forum for Change. Photo: Ruth Towell/Leprosy Mission

With the support he has received, Kanagarasa has found more than new hope – he’s also found new purpose. As someone who suffered the effects of leprosy for years before seeking help, he wants to make sure that others don’t do the same and is now a keen advocate for people affected by the disease in his community.

As a member of the Leprosy People’s Forum for Change he works to raise awareness of the effects of the disease and the importance of early diagnosis, encouraging anyone who is worried they have leprosy to come to see him so he can help – and make sure they go to the local hospital.

“I want to do what I can to help end leprosy in Sri Lanka,” he said. “I am an example of what can happen without treatment and I want to be an example to others.”

At one community meeting at the hospital, we watched as Kanagarasa spoke to those attending and shared his story, encouraging them to see the way he has been disabled by leprosy as an important reminder of how vital it is to get treatment.

This Christmas, will you join with Kanagarasa to help fight against leprosy? He is doing all he can to raise awareness of the disease, but it is with your support that our teams can diagnose, cure and treat people. And they can’t wait – the longer leprosy is left untreated, the more severe its effects on the body become.

Please act now and give a special gift this Christmas that will make all the difference to a person affected by leprosy. Your support means so much to people like Kanagarasa and all those he helps. A gift of £24 will get the cure for leprosy to one person, changing their life.

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.

Jutlen’s transformation

Some of the postcards you sent to Jutlen last summer
Some of the postcards you sent to Jutlen last summer

Helen Walton reflects on a very special reunion.

Do you remember Jutlen? Last summer, our appeal focused on Premananda Hospital in Kolkata, India, sharing his story. Jutlen was a 16-year-old boy alone in hospital, fearful for his future, in need of surgery on his hands and feet and deeply upset by the stigma he had suffered because of leprosy.

I, too, remember the day I met Jutlen, because it changed my life forever.

Jutlen, on the day I met him at Premananda Hospital in Kolkata.
Jutlen, on the day I met him at Premananda Hospital in Kolkata.

As I sat on Jutlen’s hospital bed, looking at the harrowed expression on his face as he told me his story, I saw such pain and hopelessness that it has haunted my heart ever since. I wept for this young man, for the injustice he has suffered and for his pain.

His parents had died and his best friend had refused to have anything to do with him once Jutlen told him he had leprosy. Although he was cured of the disease, he was alone, disabled and scared for his future. I left his bedside that day full of sadness for him and for his situation.

As part of last summer’s appeal, we asked you to send Jutlen and others like him your prayers and messages of support. It was wonderful to see the outpouring of love for this young man. Your good wishes for his future meant so much.

Returning to Kolkata recently, with a couple of hours to spare before my onward flight, I returned to Premananda Hospital. I was overwhelmed with curiosity as to Jutlen’s whereabouts. Where was he? How was he? As I was escorted to the men’s ward, I saw him. One of his legs was in plaster, indicating that he had recently had an operation – the reconstructive surgery he so badly needed to help him walk properly again.

Jutlen was completely transformed
Jutlen was completely transformed

What I hadn’t expected was the complete transformation that I saw. It wasn’t just the physical transformation – Jutlen’s smile was infectious; he was animated and excited to see me. Slowly he got off his bed, then knelt and touched my feet and knees, a gesture of thanks and gratitude.

Through the loving care he has received, all thanks to you, Jutlen has found hope again. In just a few short months his life has been turned around. He is healing from the effects of the rejection he felt and was looking forward to returning to education on leaving hospital.

It made my day to be able to spend time with Jutlen.
It made my day to be able to spend time with Jutlen.

When you supported Jutlen and others like him at Premananda Hospital, you helped turn a young man’s life around. Because of your kindness, Jutlen has found new hope. I’m so thankful that I got the chance to meet him again and see this for myself – and I couldn’t wait to share the news. As he rebuilds his life, please continue to remember Jutlen – as well as the other patients and staff at Premananda Hospital in your prayers.