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.

A ministry of reconciliation in Sri Lanka

Religious leaders in Sri Lanka meet ahead of a Puttalam interfaith leprosy event
Faith leaders meet ahead of an interfaith leprosy awareness event in Sri Lanka. L to R V Sundaran Raman (Hindu), Pastor Grashan Sanjeeva (Christian), Abdullah Mohammed Alim (Muslim), Kirologam Sudassi Thero (Buddhist) and SR Muzammil (Muslim).

In the aftermath of the devastating Easter Sunday bombings in Sri Lanka, National Director Peter Waddup writes of The Leprosy Mission’s part in a ministry of reconciliation there.

On the morning of Easter Sunday, a joyous day when hope and faith are renewed, the radio news delivered the devastating blow of a string of suicide bombings on churches and hotels across Sri Lanka.

A country struggling to rebuild itself following the three-decade bloody conflict that killed tens of thousands of people had been struck again, this time the minority Christian community its target. Almost 350 were killed and upwards of 500 injured.

Having visited this beautiful country and being welcomed with open arms by its wonderful people back in February, I was heartbroken.

I had witnessed, with tears in my eyes, members of the different ethnic and religious groups in this still fragile nation – Singhalese, Tamil, Christian, Muslim, Buddhist and Hindu – come together with the common goal of reaching out and finding and curing people of leprosy. If left untreated, leprosy is physically devastating as well as emotionally scarring and Sri Lanka is known to have a high rate of ‘hidden‘ leprosy cases.

A decade ago, my colleague Siân Arulanantham, Head of Programmes, was praying during her first visit to Sri Lanka as The Leprosy Mission England and Wales began working in a country still reeling from conflict.

Siân said she felt God say that our work there must be about peace. This confused her as she thought ‘obviously it’s about leprosy’. But we have since learnt that we needed to bring divided religious and ethnic groups together to have a significant impact on leprosy.

Meeting our partners in Sri Lanka, I heard some incredible ‘God moments’ where people who traditionally wouldn’t be in the same room together are now working together to find and cure people with leprosy.

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Vice-President and President of the Leprosy People’s Forum for Change in Sri Lanka, Amarasinghe and Nahamani, have bridged an enormous divide to work together.

As an illustration, the President of the Leprosy People’s Forum for Change, Nahamani, 73, is a Hindu Tamil working closely with his Vice-President Amarasinghe, 38, a Singhalese Buddhist.

It broke my heart to hear how leprosy sufferer Nahamani had lost two sons in the conflict and had been treated so badly, because of deep-rooted prejudice surrounding leprosy, that he contemplated suicide. But instead he channelled his grief into leading a leprosy screening programme in more than 30 villages in the Jaffna district of Sri Lanka. In one day I had the amazing privilege of meeting five children who had been diagnosed with leprosy and cured before any damage was done to their bodies.

Almost in a modern take of the Good Samaritan, Vice-President Amarasinghe was rescued by Rev Joshua, a Tamil and someone from the very community he despised when diagnosed with leprosy back in 2015. He now gives money he can barely spare to support children from the Tamil community who he once hated.

So the word my colleague Siân received from God all those years ago is being lived out.

It all began in 2014 when The Leprosy Mission and its partners began training pastors and church leaders about leprosy, the idea being they could offer practical help and advice after delivering a service, say, on Jesus healing the man with leprosy.

Initially it was a project run throughout evangelical churches but then, amazingly, other faith communities wanted to be involved from Anglicans to Catholics and then Buddhists, Muslims and Hindus.

This was hugely encouraged and resulted in nearly 10,000 people hearing about leprosy through 78 interfaith awareness events as well as another 20,640 people reached through 349 leprosy awareness Sundays. The work is growing and continues. Scores of people have been diagnosed with leprosy as a result with the sting of the disease taken out of the diagnosis for many thanks to the powerful nature of the campaign. In addition, prejudice between the communities is being broken down through new relationships and friendships formed between religious leaders.

We were devastated to learn that one of the three churches targeted on Easter Sunday – the Zion Church in Batticaloa – was where a leprosy Sunday service had been carried out in January. The blast killed 27 people, including 15 children, and injured more than 50 others.

With this catastrophic loss of life we weep as God weeps and our request for prayer is that the reconciliation between religious and ethnic groups will only grow stronger following the Easter Sunday tragedy.

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.