From fear and desperation to hope for the future in Nepal

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Surroundings of Anandaban Hospital. Photo: Tom Bradley

Laura Stopczynski shares her experiences of visiting Leprosy Mission projects in Nepal.

Nepal is a breathtakingly beautiful country. Despite the devastation of the earthquake two years ago, it’s also a very resilient country, with an incredible testimony of survival through great hardship. I don’t think I could have fully prepared myself for what I was about to encounter there.

There is not one word which can describe my trip to Nepal. Meeting people affected by leprosy and seeing the Mission’s work for the first time was quite an overwhelming, burdening and sad experience, yet at each hospital that I visited, I saw an outpouring of God’s love and the hope of Jesus and realised that being part of the Leprosy Mission family means we are all helping to transform the lives of people affected by leprosy, in many different ways.

But I also felt overwhelmed by the amount of desperation and need. I wasn’t sure how to process everything. Over and over again, I kept thinking about what was next for these people? What was their future going to be like? What will happen to them? It’s hard, knowing that ultimately there is no ‘quick fix’ for people whose lives are so affected by disability and poverty.

Despite this, I repeatedly saw the staff interact with each and every patient, showing them kindness, love, support and ultimately hope through their actions. It showed me that whatever role we have, whatever we are doing, if we act with love; genuine and integral love – we can make a lasting difference.

There are many stories which I could share about my trip but one in particular has stuck with me. I would like to tell you about meeting Suman.

I met Suman when I was in Surkhet, a beautiful and peaceful place. The clinic there is relatively small but is a safe haven and beacon of hope for so many in the rural western parts of Nepal.

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Suman at the Surkhet clinic, where he receives ulcer treatment

Despite the huge cast on his foot and his struggle to walk, Suman had so much energy about him. He had the biggest smile on his face and was quick to make me smile too.

It was obvious to see his joy and comfort from being at the clinic, especially when he saw counsellor Gyann Gurrang.  It was wonderful to see their undeniable friendship and the strong bond between them.

Gyann is so invested in his patients and my admiration for him is unbelievable. His role is to listen to patients day in and day out, trying to help them deal with the mental and emotional pain of having leprosy. It takes a lot of inner strength to carry those burdens.

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Gyann, the clinic counsellor

Suman’s leprosy journey began when he first noticed a loss of feeling in his hands and feet and then also discoloured patches on his back. A devout Hindu, he was terrified that he had done something to upset the Gods. He was so afraid that he went to a local healer straight away. When his patches didn’t disappear and his loss of sensation only grew worse, he was in complete desperation.

“Why have the Gods done this to me, what have I done to deserve this?” he remembered thinking.

After confiding in his uncle, who directed him to the clinic to get help, Suman was diagnosed with leprosy at 50 years old. To his amazement, the doctor explained to him that the disease is curable, totally changing Suman’s outlook on what was happening to him. He started to take multidrug therapy and was soon cured.

However, Suman’s story didn’t end there. He has been in and out of the Surkhet clinic for the past 11 years, suffering with recurring ulcers, a common side effect of leprosy. Even though he has disabled hands and feet, he still has to provide for his family. As a manual labourer, he has little time to rest and little chance for his wounds to heal. Sadly, this is the case for a lot of people who are affected by leprosy. The need to earn a living and provide for their families has to take precedence over recuperation.

When I asked Suman about his future and what he hoped to do, he got very excited. His eyes widened and I could tell he was extremely pleased to tell me this part of his story. He explained he has been provided with five goats and that he has sold some and made a profit, but will rear the others and sell their milk.

It was just so wonderful to hear him so proud of what he was achieving despite his struggles.

Suman’s life has been transformed, from being full of fear and desperation, to healing, joy and excitement about what the future holds. This wouldn’t have been possible without your support. We are all playing our part to help Suman and so many others like him.

“People kept their distance” – Jaseem’s story

Alisia O’Sullivan reflects on her trip to India to meet the CREATE project team and some of the people they will be helping in the future – including Jaseem.

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A man affected by leprosy in one of the villages in India I visited. Photo: Ruth Jones

On my last day of my first trip to India to visit the work of The Leprosy Mission there, I tried to capture some of the many thoughts and feelings whirling around my head in writing:

‘Poverty, humility, despair, hope, pride, change, beauty, contrast, noise, pollution, exciting, exhilarating, HUGE.

‘How can I encapsulate all I’ve seen? It’s been so busy and such a jam-packed schedule to visit examples of our work and see the needs of leprosy affected people in India.

‘It’s been difficult to process everything – and now I’m here on the last morning before flying back to the UK and I finally have time to pause and reflect.

‘I thank God for the clean bed I’m staying in. As the monsoon rain pours down I’m dry, mud-free and there’s no stench of animals and their waste (an ever-present odour as we visited leprosy-affected families and communities).

‘I thank God that I’m going home to a family who love me – and whilst I’m not perfect, they would never throw me out because I contracted a curable disease.

‘I thank God that I have a good job and can help people affected by leprosy, so when I tell the stories of people in need, I pray that I do honour them – that I can say what I saw and convey the need, but also that I can show what a difference can be made in their lives.’

Here’s a story I want to share about 22-year-old Jaseem, who was facing an uncertain future on the day we met him.

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Jaseem, a young man affected by leprosy. Photo: Ruth Jones

Early on in our busy trip to see the CREATE project, we arrived in a remote Indian village where the streets were so narrow that we had to abandon our car and walk the final part of the journey on foot, causing quite a stir as people noticed our CREATE t-shirts.

Throughout the trip I was especially conscious that meeting young people affected by leprosy and interviewing them is quite a responsibility, asking personal questions about such a difficult subject. With Jaseem, much of his story was articulated not through words but rather through his sad stare and nervous hand wringing.

It tugged at my heart that when Jaseem was being photographed, I noticed how one of his younger brothers slipped away out of the frame – maybe because he was shy or perhaps because he was too embarrassed by the crowd and the attention being given to his family, who have been through so much. I really felt his sense of rejection and uncertainty that day.

Jaseem shared with us that when he discovered he had leprosy, he felt worried and that his life was not worth living. He said he only started to feel better once he was under the care of the hospital where he received reconstructive surgery on his hand and foot.

Unfortunately, despite being cured and with his mobility improved, he experienced ongoing discrimination in his village. People would not sit with him or kept their distance and he took care to hide his hand. It was heartwrenching to hear that such a handsome and bright young  man was being shunned by his neighbours. Living in a remote community, he had nowhere else to go.

It was a stark reminder that even when people have been cured of leprosy, their lives are not necessarily transformed. It’s a much bigger challenge to educate and change the hearts and minds of isolated communities where age-old prejudices are rife. That’s why the CREATE project, which will tackle discrimination in four states across India, is so badly needed.

Later, I discovered that Jaseem has been looking for work after completing training as a mobile phone technician but frustratingly, he had not been offered a job, again due to the stigma associated with leprosy.

When I asked him if he thought things could change for people like him affected by leprosy, he said that people would not listen to him, but would listen to people like us,  by which he meant the CREATE team and doctors.

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CREATE project staff raising awareness about leprosy in rural India. Photo: Ruth Jones

As we left I wanted to encourage him and said we were looking to help and would be praying for him and his situation. Jaseem thanked us profusely and CREATE project staff assured me that they will now be involved in advocating for him as he looks for work and to tackle stigma in his village.

There are many more young people in India just like Jaseem, facing uncertainty and anxiety about their futures because of their leprosy. By supporting the CREATE project, you could play your part in making sure stigma is stamped out and that people affected by leprosy will have the opportunity to complete their education, work and look forward to brighter futures.

Find out how a gift from you could help stop leprosy discrimination in India. You can also watch a video of Jaseem talking to Alisia about his experiences.

Feet First one year on: 5,000 lives changed

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Steve Besford (left) with staff from Food for the Hungry, The Leprosy Mission’s partner in the Feet First project.

Steve Besford is our Programmes and Advocacy Officer for Africa. We asked him a few questions about his most recent trip to Mozambique and how you’re helping people there following your overwhelming response to our Feet First campaign last summer, where every gift was doubled by the UK government.

Mozambique has been a special place for you for a long time, hasn’t it?

Yes – every time I have to visit Mozambique I’m just so delighted to be back. I first went to work there in 2002 when I was taking a year’s sabbatical from my job in the aviation industry. I worked in an orphanage, with an organisation called Maforga. It was a life-changing year for me, not least because I met my wife there. She was also working at the orphanage, as a nurse. After some time back in the UK we moved back to Mozambique, this time with our children.

I’ve been based in the UK again since 2010 and was looking for an opportunity to use the expertise I gained working in Mozambique in a UK context. So when I saw my current job at The Leprosy Mission advertised it seemed like the perfect opportunity. I really believe God led me to the organisation.

What was the purpose of your latest visit to Mozambique?

I went to visit the small team of staff and the communities that have been helped by UK supporters in three areas – Macomia, Chiure and Pemba. The trip also involved taking part in training workshops and teaching project support officers more about leprosy signs, symptoms and treatment. These are local people who really initiate change across the communities in which we work.

What’s life like for people living in the places you visited?

There is terrible poverty. For several months of the year – the ‘hungry months’ – people don’t know where their next meal will come from. Sanitation is lacking and drinking water is often filthy, which as you can imagine makes sickness very common. Construction of houses is very basic, which means that heavy rains can cause them to collapse. The culture is very much based around the extended family – everyone looking out for each other. Community is so important.

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Residents of a village in Cabo Delgado province. Photo: Paul Salmon.

How much of a problem is leprosy?

Cabo Delgado province, where much of The Leprosy Mission’s work is, has the highest prevalence of the disease in the whole country. It’s common to see people with clawed hands and missing toes and stigma is sadly still a huge issue. People still hide the symptoms of leprosy because they’re afraid of the prejudice they know they could experience. We’re doing all we can to change this, but it takes a long time to change deeply-held beliefs.

How has the Feet First project been making a difference so far?

Leprosy Mission staff in Mozambique are thrilled that people in the UK are enabling them to work with so many leprosy-affected communities. Leprosy is endemic in 11 out of 16 districts in Cabo Delgado so a lot of help is needed but thanks to gifts to our Feet First appeal, more than 5,000 people have benefited from the project so far in various different ways, including disability care and ulcer treatment.

We have worked with people to set up savings groups, where members pool their savings, creating a fund that they can apply to for credit if they want to set up a small business or buy new farming tools and seeds, for example. Once they have paid back the loan, the money is available for someone else to borrow.

Feet First is also training people in new agricultural techniques to improve crop yields. As more people in the communities we’re helping see their leprosy-affected neighbours benefiting from better harvests, we’re hoping that even more people will get on board, giving greater food security for everyone.

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Members of a savings group in Mozambique learn about money management and how savings can be used as microcredit to improve their lives. Photo: Paul Salmon

And what about leprosy detection? Are many people being newly diagnosed?

Yes. A new mapping initiative has already seen 80 new cases of leprosy diagnosed and treated. People are also being diagnosed due to greater awareness of symptoms. I talked to one couple who, as a result of leprosy awareness training in their village, spotted that their 18-year-old daughter had a lighter patch on her skin – one of the first signs of the disease. They took her to the local health centre where she was diagnosed and given the cure. Cases like this are such a huge step forward. Whereas once they might have been afraid for their daughter and reluctant to be seen to be going to the clinic, they now know that early treatment is the best option.

You took piles of ‘prayer feet’ decorated by UK supporters last summer on your trip. What was people’s reaction to receiving them?

They were touched that so many people so far away were thinking of and praying for them. Many people asked me to say ‘thank you’ on their behalf. I also took a ‘map’ of Mozambique decorated with prayers and messages to the Leprosy Mission office where it’s now hanging on the wall.

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Prayer feet’ decorated with messages by people in the UK last summer.

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