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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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

You’ve cured six year old Akira!

NTD and Research Coordinator Shabina Sadiq reflects on her recent visit to Sri Lanka.

I met Akira and her mum over a year ago when I went to visit The Leprosy Mission’s projects in Sri Lanka.

Like any child she was shy to begin with but very playful, mischievous and with a curious nature, wanting to know why so many people wanted to talk to her mum and not her. Her mum has leprosy and her dad left them when he learnt about his wife’s diagnosis. Akira was only a baby when he left and she has never seen him since.

Whilst we are talking to her mum, she mentions to the Project Officer and Doctor standing next to her my daughter has a skin patch on her upper arm”.

They immediately turn to Akira and ask to look at the patch.

It is small, the size of a finger print, but significant enough for the Project Officer to say “bring her in to the centre and we will take her for tests”.

Immediately, I find myself looking straight at Akira thinking ‘she looks fine’. Akira, oblivious to what is happening around her, looks at me smiling and pointing, as if to say let’s go and play outside.

I turn back to her mum and suddenly realise that I do not need to worry. Akira’s mum is a Leprosy Champion. I am standing beside an amazingly strong woman  who, like any mother, will fight for her child’s good health.

Over a year later I find myself back in Sri Lanka. Akira’s mum recognises me immediately and comes to shake my hand saying “it’s like meeting an old friend again”. She then points behind me.

I turn and see Akira in the distance, giggling with laughter and waving.

She has completed her MDT and looks like most happy children. She still has the mischievous look in her eye, one that at times I can relate to.

She looks healthy, loved and full of hope.

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Six-year-old Akira’s future is full of hope after being cured of leprosy.

I have seen what can happen when people with leprosy receive the treatment they need quickly – this transformation is thanks to our amazing donors. It’s difficult to think about how different Akira’s life may have been if she hadn’t received the support and care she needed immediately.

Thanks to your support, our teams in Sri Lanka are able to change lives.

Thanks to you, teams in Sri Lanka are able to reach out and support people like Akira’s mum, giving them the confidence, skills and strength to overcome the stigma and discrimination associated with leprosy. Leprosy Champions, such as Akira’s mum, are able support others in their communities.

You have made it possible to train local project staff so they can recognise the signs of leprosy immediately – stopping leprosy in its tracks and preventing disability.

Thanks to you, leprosy doesn’t have the opportunity to steal hope and joy from little children like Akira.