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 heart-breaking 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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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.

sri lanka
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.

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.

May 9 Blog
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.