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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Nandlal’s hope for a new home

 

Lal Bahadur Tamang and Kanchhi Maya Tamaz
Nandlal and Muna

Nandlal, 58, and his wife Muna live in Kavre District, Nepal, together with their four grown up children. Before the earthquake, Nandlal had overcome leprosy, going through long term treatment at Anandaban Hospital. With support from the hospital, he had started up his own business – a grocery shop – and was also keeping goats. It was a far cry from the life of suffering he experienced before being cured of leprosy.

25 years ago, he noticed strange symptoms – tingling sensations in his arms, and blisters on his hands and feet. Traditional healing had no effect, so Nandlal eventually visited his local health clinic and was horrified to be told he had leprosy. He told us he was afraid because the stigma surrounding disease was so bad.

As his symptoms got worse and developed a terrible ulcer on his leg, a neighbour suggested he go to Anandaban. By the time he arrived, the ulcer had become infected and had made him seriously ill. Thankfully Nandlal finally received the care he so desperately needed – and was cured of leprosy.

His ulcers have never returned, thanks to the fact he follows the self-care regime he was taught at Anandaban. And happily, The Leprosy Mission’s stigma prevention work in the area means he has been able to carry on with life without prejudice from the community.

But Nandlal’s life changed forever when the earthquake hit. The whole family was in the grocery shop attached to their home when it happened. Mercifully, the shop did not collapse and they escaped uninjured,  but the house was destroyed. Three of their five goats were also killed when their shed collapsed.

The family lived under tarpaulins, until they received emergency aid – thanks to your generous response to our earthquake appeal – that enabled Nandlal to buy corrugated sheets to make a temporary shelter. The shelter is a short term solution, but they need a permanent home.

Right now, Nandlal is unsure what the future holds. The effects of leprosy on his hands and feet mean he is quite limited in what he can do – but the death of his goats and his damaged, unstable shop mean he’s worried about having enough money to get by. Most of all, the family need a new home that would keep them safe and sheltered from the elements.

You can help Nandlal and others like him get the fresh start they need. Nandlal has been through so much because of leprosy, disability and now the devastation of the earthquake. A gift to the Rebuild Nepal appeal could ensure that he will have a fresh start.

A gift of £20 will provide a toilet and sink for a new home. And £55 will pay for a pallet of bricks to get building started. You can make a difference to people like Nandlal today.

 

Stories from Nepal: Pavitra

The final installment of Partnership Manager Louise Timmins’s blogs from Nepal, where she visited Anandaban Hospital last month, meeting some of the people whose lives have been devastated by the earthquakes. Towards the end of her visit she met Pavitra, who benefited from a new house thanks to The Leprosy Mission last year.

Pavitra at the Self Care Unit at Anandaban Hospital.
Pavitra at the Self Care Unit at Anandaban Hospital.

The Self Care Unit at Anandaban Hospital is where patients affected by leprosy learn how to soak hands and feet which have lost feeling because of disease, remove dead skin and moisturise with oil. This is so important because soaked, supple skin is less likely to crack and injure. Injuries can turn in to horrendous ulcers which take months to heal. Sadly in some cases, the ulcers become so infected that amputation is the only option.

As I walked down the 360 steps from the hospital to the Self Care Unit, I could see eight or nine patients sitting and chatting together. It is fantastic that they can share experiences and encourage one another here. Only someone who has experienced leprosy first hand can really understand the horrors of the disease.

Pavitra looks on as Self Care Unit manager Kassi tends to her feet.
Pavitra looks on as Self Care Unit manager Kassi tends to her feet.

Pavitra had just soaked her feet and was having the dead skin removed by Kassi, who is also affected by leprosy and manages the Self Care Unit. We started chatting and Pavitra told me her story:

“I was sixteen when I first noticed I was losing feeling in my hands,” she said. “It was very strange and I didn’t understand what was happening. I was scared so I just ignored it and tried to hide what was happening from my family and friends.

“Luckily my parents found a husband for me and we got married. I kept the secret of my illness from my husband, but when we had a son a year later, I couldn’t hide it anymore. By this point my hands were almost useless; my fingers wouldn’t straighten and I didn’t feel it when my son grasped them. I kept burning myself when preparing meals. It was terrible. I felt so sad all the time.

“My husband was so angry – he realised I had leprosy. He threw me and our son out of the house. I was disgraced – I am from a low caste, and with leprosy too I knew I didn’t have much of a future to look forward to.

“Thankfully my mother took us in. I’m an only child and she was so good to me.

“I now live with my son and his family – I have five grandchildren so it’s a busy household. My son also ran a tailoring business from the house until recently.”

Despite the support of her family, Pavitra has faced new challenges following the earthquake at the end of April.

“When the earthquake came we lost everything,” she told me. “Thankfully no-one apart from my daughter-in-law was inside the house – she jumped out of the upstairs window to safety. Our home is gone and our income from my son’s business has gone. We are desperate.

“I feel very sad about losing my home; it was only built by The Leprosy Mission last year. I was so excited when we moved in. I’d never had a toilet in 57 years – it was wonderful! Now I wonder what will happen to us.

“We’re living in a tent; it’s really hard to manage in such a small space, especially when it’s raining.

“I am thankful for The Leprosy Mission; they treat me like family when I am here. It’s almost like coming home. I hope that God will provide me with a house for my family again. I don’t know how we will manage otherwise.”

The Leprosy Mission Nepal is currently looking at plans to start rebuilding homes destroyed by the earthquake early next year. We value your prayers as we do so and hope we will be able to partner with other organisations in Nepal to transform the desperate situations of people like Pavitra.