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.

The man who changed my mind about coconuts

Kunam with some of the coconuts he is now growing thanks to your support.
Kunam with some of the coconuts he is now growing thanks to your support ©Ruth Towell

On World Food Day, Stuart Towell reflects on a visit to Sri Lanka, where your support is enabling people affected by leprosy to develop sustainable sources of food and income through agriculture. 

There are so many foods that divide people’s opinions: ‘love it or hate it’ foods. Maybe there is one that instantly springs to mind for you. Maybe it’s coriander, olives or blue cheese (all of which I like but that I know people have strong feelings about!). A big contender in my house is mushrooms: my wife’s not a fan, but I love them.

But what does this have to do with coconuts? Today is World Food Day, and it got me thinking about how I’ve had the privilege of being able to travel and try some amazing foods around the world – some that I’ve enjoyed, and some less so, despite people telling me that I was bound to love it.

For me, the best example would be fresh coconuts, specifically fresh coconut water. Many would say that drinking it here in the UK is not the same as having one freshly picked. But for me, even after trying freshly picked coconuts several times while overseas, I just didn’t get the hype.

That changed the day I met Kunam, earlier this year.

Kunam lives in Sri Lanka and is one of the members for the People’s Forum for Change, a group of people affected by leprosy who are campaigning for change across the country to ensure that more people are diagnosed with leprosy and cured – and also to combat the stigma of the disease.

He was diagnosed with leprosy in 2015, when Leprosy Mission staff ran a screening programme in his village. Due to lack of sensation in his leg because of nerve damage, his leg got badly burned by the fire one evening as he slept. As a result of his burn his leg had to be amputated.

Kunam has now been cured of leprosy, as well as taught self-care, so that he can ensure that he doesn’t suffer any further infections or burns. Thanks to your support, he has also been provided with coconut plants and agriculture training so that he can provide for his family.

Kunam's son harvesting coconuts ©Ruth Towell
Kunam’s son harvesting coconuts ©Ruth Towell

As we were getting ready to leave, Kunam motioned to his son, who quickly scaled a palm tree and cut down enough coconuts for everyone to eat. I became a little nervous. One thing is for sure – I did not want to offend Kunam after he had been so generous to us.

Kunam’s son cut the top off the coconut and handed one to me, motioning for me to drink. I raised the coconut to my lips and took a sip. Suddenly my preconceptions about coconuts were blown out of the water. It was completely different to what I was expecting. In fact, it was absolutely delicious.

It turned out this coconut had grown on one of the plants that was originally provided by incredible Leprosy Mission supporters too. It was such a privilege to be able to try one, and to meet Kunam and hear about his life. He is a man that uses his own experiences to help educate others to get treatment before irreversible damage happens.

I left realising that now my mind had changed. I now liked fresh coconuts – and that was all thanks to Kunam.

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