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.

Look behind the lens of leprosy with photographer, Tom Bradley

We asked photographer, Tom Bradley, to share his experiences from Bangladesh and how your support really can transform the lives of these forgotten communities.

“As I watch Shopna examine patches on the faces of brothers Chaina and Joy, aged six and nine, she takes down their details, marking them both as suspect leprosy cases, Masuma spots another boy in the crowd with facial patches, noticing that he looks just like Joy. She soon discovers that the boy was his twin brother, Bijoy. He too has the telltale patches on his skin – three children from one family potentially affected by leprosy.

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6-year-old twins, Joy and Bijoy, may have leprosy. Photo: Tom Bradley

Shopna is a Field Organiser for The Leprosy Mission’s partner Mukti, and she’s assigned specifically to diagnosing new cases of leprosy, along with her co-worker Ripon. My name’s Tom Bradley; I’ve been photographing people affected by leprosy for almost a decade now, and I’ve been following both Shopna and Ripon for the day, as they have been called out to examine two suspect cases of leprosy in a village in western Bangladesh. Accompanying me are Leprosy Mission staff Masuma and Jiptha, both of whom are also trained to recognise leprosy cases.

But Bijoy isn’t the only extra case that day. As Shopna begins to examine him, another boy, 10-year-old Durantha, is pushed to the front of the onlooking crowd of children. He also has patches on his face. And he is not the last unexpected case that day either.

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10-year-old Durantha has patches on his face. Photo: Tom Bradley

We walk through the village on this very hot and humid morning, followed by a number of children and a few adults. Most of the men are out working in the fields, and a few of the women steal away from their work preparing food, looking after the house and children and tending to any livestock left at home.

As we leave the village, we walk along narrow paths, slightly raised up with earth to divide the square rice paddies.

It seems it’s difficult to even leave the village without spotting yet another child with patches of leprosy.

Meanwhile Shopna and Masuma, walking a little behind us, are called off to someone’s house, having just been informed of another child who has patches on their face. Two more suspect cases are discovered. Having caught up with us, Shopna takes over from Jiptha to take down the boys’ details.

As we move onto the next village, just across the road, Shopna comes across a young man with patches on his arm. The patches show signs of clear anaesthesia, and then Shopna realises his mother is affected by leprosy, although she was cured some time ago. The young man, Dukhiram, is confirmed as a new case and Shopna notes down his contact details so he can be supplied with the vital MDT tablets as soon as possible.

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Shopna checking the patch on Dukhiram’s arm. Photo: Tom Bradley

The next village is much the same as the first, and though we’re going primarily for my benefit, to interview an old patient I have met before, Shopna is busy wading through the crowd picking out people with patches on their face.

The work seems neverending – so many suspected new cases found.

Shopna hasn’t yet been doing this work for a month, but already enjoys it greatly.

“When I visited the field last month, I felt very encouraged. If I visit more areas I can identify more people affected.” Shopna tells me. “I feel it’s such a great opportunity to work with them and help them get treatment in time. I feel really proud doing this work.”

I can see Shopna enjoys her new job and is so good at interacting with the people she meets, smiling and reassuring them, but also listening with genuine concern if they talk about their problems.

“Now so many women come to meet with me and talk about different issues,” she says.

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Shopna works tirelessly to ensure people with leprosy are diagnosed and treated. Photo: Tom Bradley

Shopna’s job, which takes her out into the community most days in the week is absolutely vital in effort to combat leprosy in the area, where people living in remote villages may not get the treatment they need otherwise, their leprosy left undiagnosed.

On this day alone she registers ten new suspect cases and one new confirmed case. The suspect cases will all be followed-up regularly, so that if their patch does indeed turn out to be leprosy they can be put on treatment and cured, hopefully, without complication. The longer leprosy is left untreated, the more potential it has to cause severe disability and have an even greater impact on someone’s life.

People like Shopna work tirelessly to prevent this from happening, a real lifeline to the people they meet.”

You can see more of Tom’s work on his website or on Twitter/Instagram @tombradleyphoto

Savings group looks forward to a more secure future

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Saving for the future: the farmers’ group in Chai village, Mozambique. Photo: Paul Salmon

Every two weeks on a Sunday morning, a large group of people from the Chai village farmers’ group – including many who are leprosy-affected – gather under the shade of a large tree to shelter from the sun.

Each member puts 10 Mozambican Meticais (about 10 pence) into an old flag laid out on the ground, before the coins were gathered up and placed in a secure box. This money goes into their community chest, from which anyone can borrow in an emergency.

Next, each household deposits whatever else they can afford into a separate individual savings pot. Security is high, with this secure box placed into another box and then into a third even sturdier box. All three boxes are locked individually with keys held by three different people.

Every two weeks, the farmers’ group get together to do this so they can save up for a very different future for their families.

Farming is the main way of earning a living in this very rural part of northern Mozambique. The majority of the group are mothers like Olencia, who wear their youngest children on their backs while working the land, growing maize, cassava, beans, peanuts and potatoes in small community plots.

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Olencia, a member of the savings group, who has been putting money away to save in case of a medical emergency.

Olencia told us that the 500 MT she deposited in the savings box that day was for medical emergencies. The mother of four, whose two older girls are married, has a one-year-old and a five-year-old and wants to do the best she can to ensure a better future for them.

Driven by love, the stories of each of the savings group members were similar. Parents who had never had the opportunity to learn were saving up to give their children a better chance in life through education; others were putting money aside simply to ensure that they could pay for treatment should their children become ill.

With no public transport and the nearest bank many miles away, putting money aside for emergencies wasn’t something the farmers living in Mozambique’s remote villages could do in the past. The knock-on effects of unexpected costs – such as a relative’s funeral – could be longlasting and utterly devastating.

Judy Atoni, Programs Manager with Food for the Hungry Association – The Leprosy Mission’s partner organisation in Mozambique, said “When there was, say, a relative’s funeral, they had to sell their grains to get cash. It left them with little food for the rest of the year and resulted in malnutrition.”

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Adelino counts the money before it is locked away for safekeeping. Photo: Paul Salmon

As a result of the Feet First campaign in summer 2015, more than 60 savings groups have now been set up across Cabo Delgado province by The Leprosy Mission in partnership with Food for the Hungry. These life-changing groups have only been made possible by your overwhelming response to Feet First, where every donation was matched pound for pound by the UK Government.

“As word gets around we are finding that more and more people are getting interested in joining the groups,” said Judy.

Adelino, who is leader of the Chai group, told us: “If there is an emergency – for example, someone is sick and needs to go to hospital – they can borrow money from the community savings pot.

“People can also borrow from the individual savings pot for any needs or purchases. If it is less than the amount they have saved then there is no interest to pay.”

Adelino is a father of four boys and said that the money he put into savings that day was to help pay for his two older sons’ education.

“There is no secondary school in this village. The nearest one is 45 kilometres away,” he said. “I want my sons to get good jobs so they can help improve the lives of people in the village.”

Your amazing generosity means families like Olencia’s and Adelino’s can now rest easier, knowing they have financial security, and that they can plan for the future.