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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“STOPPING FOR THE ONE: MY JOURNEY IN INDIA” PART TWO

Vicki Davison, Partnership Advisor, reflects on her recent visit to India.

About half way through the trip, we spent a morning at Salur Hospital, the only hospital in Andhra Pradesh State that provides specialist treatment for leprosy-affected people. As we arrived, we were greeted by the hospital superintendent who showed us round several wards and explained the services offered at the hospital. Salur treats approximately 25,000 patients a year; the treatment provided for general patients subsidises the cost of care for leprosy-affected people. Specialist reconstructive surgery, eye care, ulcer care and diagnostic tests are all available for leprosy patients.

We visited a few of the wards, stopping to pray with patients and listen to their stories. Having spent some time in the men’s ulcer care ward, we were told there was one patient who we had to meet; the staff led us along the corridor into the women’s ward and she was immediately obvious. A young woman of only 20-years-old, Sadhika sat cross-legged on her hospital bed. She was quick to greet me as I sat by her, but her beautiful smile did little to mask the large discoloured patches on her cheeks and deep sadness in her eyes.

Sadhika grew up in Andhra Pradesh with her parents and two older sisters, both of whom are married. From a poor family, she has never been to school and is illiterate. A few years ago, Sadhika developed discoloured patches on her face and arms. Then, when playing with her friends, she caught her foot against a rock. Although it was badly damaged, she didn’t feel a thing. Her family began to panic – they knew something was wrong but couldn’t understand what was happening to their daughter. They took her to Vizianagaram where she was diagnosed with leprosy.

Although her family remained supportive, Sadhika became consumed with guilt and self-hatred. She spent every day terrified that someone would find out she had leprosy. She knew that discrimination because of this disease could be extreme – that she could be abandoned by her community and forced to leave her family. What would she do without them? Unable to read or write, and living under the stigma of leprosy, how would she earn money to eat? Would she have to beg, or worse? And what would happen to her sisters if their in-laws found out? Ashamed to be associated with a family tainted by leprosy, would their husbands leave? Would she ever be anything but a burden to her family? What good was a life ruined by leprosy?

Over time, Sadhika lost all sense of self-worth and became suicidal. The burden of suffering with leprosy overshadowed everything else in her life – her hopes and dreams, even her love for her family. Sadhika struggled on until one day she could bear it no longer. She planned to walk to the local train line and throw herself onto the tracks.

Thankfully something stopped her.

And it wasn’t long before Sadhika was referred to Salur Hospital for specialist treatment and counselling. When I met her, Sadhika had undergone reconstructive surgery on both of her hands to correct the deformities caused by leprosy. Her right foot was carefully bandaged up to cover the ulcer that had formed from an infected cut – a consequence of nerve damage. Although Sadhika has lost all feeling in her feet and will have to practice self-care for the rest of her life, her hands are regaining strength with regular physiotherapy exercises.

More importantly, she has found healing through counselling at the hospital and is starting to dream again.

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Sadhika at Salur Hospital, India

Sadhika’s whole face lit up as she told me how she plans to learn tailoring at our Vocational Training Centre in Vizianagaram. Clothed in a vibrant pink shalwar kameez, I could imagine her sitting behind a sewing machine, chatting and laughing with the other girls, and I couldn’t wait for her training to start.

Sadhika will stay at Salur while her ulcers heal and her hands become stronger. Then she will go to live at the Vocational Training Centre, where she will learn to read and write, and take English and computer lessons.

It was a real privilege to meet Sadhika and hear how she is overcoming the stigma, shame and physical effects of leprosy.

And I’m so excited to see her take her next step and learn tailoring at the training centre – what a transformation that will be!

Kate’s Purulia Diary Part Two; “Lavanya’s battle against leprosy had begun.”

In late 2016, Kate Gent visited Purulia Hospital in West Bengal to see how Leprosy Mission staff are dealing with a huge rise in patient numbers there. Here, she shares her story.

Lavanya sat staring at her hands – this said it all. Her battle against leprosy had begun.

We sat in the counselling room at Purulia Hospital, a shared space with no privacy. Another consultation was about to start and there were people queuing nearby.  I felt flustered for her.

Even the word leprosy is enough to fill people here in India with dread.  But I admired Lavanya’s courage in the face of adversity.

It took a huge amount of bravery for her to make the long journey back to the hospital to start her treatment and she was clearly feeling very anxious. I can see it in her eyes, her posture, as wrapped up in a cardigan and scarf, she clutches her hands together tightly.

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Examining Lavanya’s arm.

She’s experienced tingling and pain in her arm. There’s a risk this could be signs of nerve damage from leprosy. Without close monitoring this could develop into serious problems, such as immovable clawed hands.

The doctor presses her elbow to test the nerves; he says they have thickened. This isn’t good news.

He points out the pale skin patches, slightly faded but still numb. Leprosy must be so easy to misdiagnose without the skill and expertise of these doctors.

Lavanya’s lips tremble: she needs further tests.  In a tiny room, the physiotherapist examines her palms and soles of her feet. With her eyes closed, she points out where she feels sensation.

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In the physiotherapy room.

Leprosy has caused greater damage than she thought. Although her hands are still reasonably flexible, she will need continued monitoring of the nerves and physiotherapy.

She says she is okay, but then she puts her head in her hands. Tears begin to roll down her cheeks. Self consciously she looks at me and when she saw my eyes fill with tears too, gradually, she begins to open up.

When Lavanya first found the numb patches, she tried homeopathic remedies.  After three months she came to Purulia, having heard of the hospital’s reputation for skin and eye care, but her numbness was even worse by that point.

When she was diagnosed with leprosy she was really scared. Her husband seems supportive but he also tells her it’s a bad disease so she shouldn’t tell the neighbours about it.

She wouldn’t dare – she’s the only one with leprosy in the village. She will never tell her friends because she’s too afraid she will end up alone.

Her biggest concern is that her husband could turn against her. They have two little children; her youngest has just started walking and her son has just turned five.  If he were to throw her out, how could she manage alone?

My heart went out to Lavanya, and I prayed that God would help me to help her.  As our only shared language, she lent me a gentle, sad smile and wiped her tears with her scarf.

After I had followed her through her outpatient journey, we shared a few moments near the central courtyard.

A little girl came toddling over, her tiny arms outstretched. Lavanya bent down and scooped her up.  Her eyes lit up: her baby girl was there waiting for her.

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Lavanya and her daughter.

The road ahead is not going to be easy for this family. Although it’s fantastic that Lavanya’s got the cure and is in the hands of experts, there is still a lot for her to face. She will need Purulia Hospital more than ever, returning every month for her medicines, to learn physiotherapy exercises and to receive check-ups.

As our time together drew to a close, her little girl began rubbing her sleepy eyes, she turned her head and nestled into her mum, ready for their long journey back home – 60 miles from the hospital.

Even now I’m back in England, I think of Lavanya often. I’m so thankful that Purulia Hospital is uniquely placed in an area of India with high levels of leprosy.  But what weighs heavy on my heart is the strain this hospital is under.

There are so many more people who still need help and I would hate to see them turned away.  I owe it to Lavanya and her daughter to not let that happen. That’s why I resolved to tell as many people as I can about my visit to Purulia. The hospital needs a new Outpatients’ Department – and you can partner with The Leprosy Mission to make it happen. Find out how and give a gift today.