Anik, who is affected by leprosy, in hospital receiving ulcer treatment.

Affected by leprosy at just five years old

Anik, who is affected by leprosy, in hospital receiving ulcer treatment.
Anik, who is affected by leprosy, in hospital receiving ulcer treatment.

Worldwide, around ten per cent of new cases of leprosy diagnosed every year are in children. Sometimes, their leprosy is caught early, they’re given multidrug therapy (MDT) and cured before the disease takes its toll on their bodies. Sadly for 17-year-old Anik, from Bangladesh, this wasn’t the case. He developed leprosy when he was just five.

“I can remember a thorn piercing my right foot,” he said. “My parents took me to the village doctors who gave me medicine, but I reacted to it and my arms and legs swelled up.”

By the time he was eight, he had clawed hands, ulcers and extensive loss of feeling. “I didn’t understand what was happening. When I looked around and saw that no one else was going through this I began to despair,” he said.

It became difficult for him to hold a pen and he dropped out of school, ending his education. Anik’s story here is so familiar – many of the children we meet have dropped out of school due to the effects of leprosy on their hands. Often, they’re excluded by the prejudice of teachers and classmates.

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Anik’s hands.

Anik was diagnosed with leprosy around this time and given MDT, but the drugs could do nothing for his disabilities, which began to get steadily worse. He developed a deep, infected ulcer on his leg. Not knowing how to treat the ulcer, Anik’s grandmother poured hot water on it, hoping it might help. But the scalding hot water combined with Anik’s loss of feeling in his legs caused terrible burns, making the infection worse.

“I couldn’t sleep because of the pain,” he said.

It was not until a month later that Anik eventually made it to a Leprosy Mission hospital. And by then, it was too late. The infection in his leg was so bad that aged just 12, he was told it must be amputated.

“I felt horrible when they told me, but they explained very well and I knew I must accept it. After it was gone I couldn’t sit, or move from my bed,” he said, adding that he didn’t want his family to visit him because he felt so upset about what had happened.

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When he returned home after six weeks as an inpatient, Anik learned to get around on crutches, but could no longer play cricket and football with his friends. He misses being able to do the things any other teenager can do and he knows his parents are worried about his future – who will look after him when they grow old?

With extensive disabilities and little education, Anik is facing overwhelming difficulties. He still requires frequent treatment for his ulcers and needs a lot  of support.

And he’s not alone. Many young people just like him are facing an uncertain future because of the devastating effects of leprosy on their lives. Thanks to you, we’re working to get MDT to as many people as early as possible, before they suffer irreversible disabilities.

But people like Anik need more than the cure. A gift of £10 could pay for someone to attend a counselling session. £40 could pay for a course of physiotherapy. So many people affected by leprosy feel like they have no hope for the future, but with your help, we can change this. You could make a difference to someone like Anik today.

Photos: Tom Bradley

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A rich story – Rebecca’s Nepal blog

Narb, who has endured great stigma as a result of being treated for leprosy.
Narb, who has endured great stigma as a result of being treated for leprosy.

Rebecca Pullon is part of our team of young people visiting Nepal. Read on to learn about her experiences at Anandaban Hospital.

What makes a story rich? Passion, determination, success amongst hardship? Or perhaps humility and hope? Whichever the case, Anandaban hospital in Nepal, is full of rich stories – men and women who have endured much to be healthy.

The hospital itself is a rich story, one that started in 1957 and to this day has prioritised and treated leprosy-affected people for free. It is one of three leprosy hospitals in Nepal and the only one to offer specialised reconstructive surgery. It has 80 beds for leprosy inpatients and runs outpatient clinics in three other locations once a month. Each day the staff gather at 8:30am for worship and prayer, and then begins another busy day of serving the people of Nepal.

This week I met Narb, and I want to share his story. Narb is 63 years old. He found out he had leprosy when he was just 14 years of age, and from the moment he took medicine for leprosy treatment, he was labelled as a leprosy-affected person by his community. He was never able to marry because of discrimination in his village – word of mouth spread very fast. Nonetheless he stayed in his home town to care for his mother.

She died last year so Narb has now moved to Kathmandu. and is staying at Anandaban for a few weeks to learn how to take care of himself – last month he developed ulcers on his feet. Narb has become a Christian since being treated at Anandaban hospital, he goes to a church for people with disabilities and is planning to get baptised soon.

Narb’s story is typical of the stories I’ve heard from the patients here; some of them have endured a great deal – the saddest to me is being prevented from getting married because of being affected by leprosy. Narb started crying as he shared his story with us.

Niwa soaks his feet at the self-care unit.
Niwa soaks his feet at the self-care unit.

We also met Niwa, who sat soaking his feet as he talked to us. He doesn’t have feeling in his feet and they don’t sweat so they get very dry and hard. He needs to soak his feet until the hard skin goes soft so he can scrape it off. Niwa found out he had leprosy five or six years ago and came to Anandaban for treatment. He was here for a year while he had surgery on both feet (for foot drop) and on his left hand, which had become clawed. He is from the eastern region of Nepal and has two sons and a daughter, but he lives in Kathmandu working as a carpenter, sending money back to his family.

Niwa has been back to Anandaban a couple of times after developing ulcers on his feet and is currently staying in the self-care unit to help encourage him to look after himself well. He is meant to soak his feet everyday but often doesn’t because it is seen as inappropriate by the people he lives with. Sometimes he doesn’t have time or doesn’t have an appropriate vessel to hold water. At Anandaban, staff are working hard to try to encourage people to incorporate self-care into everyday life.

I am moved by every story that I hear from the people of Anandaban. It is a privilege to hear their hearts and uncover their rich stories.

Photos: Ruth Jones

Ruth’s first day at Anandaban

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Ruth Jones, 21, is one of a group of young people taking part in a two-week volunteering trip to Anandaban Hospital, Nepal. Leaving the UK on 7 April, our volunteers are now getting stuck in to life at the hospital and learning more about our work.

I’m writing this blog post from my room in Anandaban Hospital’s Training Centre; it has the most beautiful view of the local village and hills out of my window, but I can also hear the sounds of the honking, clattering trucks as they drive along the rugged roads through the village.

Driving here is very different to the UK; I experienced this when I first arrived in Nepal on Tuesday. Even driving out of Kathmandu Airport’s car park was an experience of harsh braking and loud horns. The roads leading up to Anandaban are rugged, with steep drops at the roadside, with no barriers to protect the cars from falling – this only unnerved me when we were inches from the edge while overtaking wide trucks. Honestly, I did have complete trust in the driver – despite the chaotic road system. I have not yet seen any crashes, so there must be method in the madness!

Upon arrival at the Hospital we were greeted by some of the staff and then given Nepalese food for dinner, a welcome taste after the aeroplane meals I’d been munching on over the past 12 hours. We then went upstairs for the evening devotions – climbing the 365 steps that separate the Training Centre from the main hospital compound, as Anandaban sits neatly on a hill.

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Sleep quickly engulfed me after arriving back from the devotions, and the next morning I awoke to beautiful birdsong and the clatter and honking of trucks (not so beautiful!). After tucking into a tasty breakfast we got stuck into a day of touring the hospital, self care, and research facilities – which also involved climbing up and down the 365 stair path twice more, so I think my legs will be pure muscle when I get home! It was great to learn more about leprosy, meet some of the patients, see the facilities, and hear about how research into leprosy is developing at Anandaban.

The day came to an end with a walk into the local village – an amazing way to start our first full day in Nepal as it gave context to the lives of the leprosy patients before they entered the hospital, and the lives they will come back to when they are cured and leave Anandaban. It was also an amazing opportunity to meet some of the locals and the children especially enjoyed our visit.

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All photos: Ruth Jones