Success for leprosy champion Sharidah as village gains a water pipeline

Sharidah is a leprosy champion for her community and has recently played an important role in securing a big change for their lives.
Sharidah is a leprosy champion for her community and has recently played an important role in securing a big change for their lives. Photo: Hassan Nezamian

Your gifts to the CREATE appeal are training people affected by leprosy to become ‘champions’ in their communities who can effectively challenge discrimination and fight for change. Read on to learn more about Sharidah, one of our first leprosy champions, already making a difference in her village.

60-year-old Sharidah lives in a leprosy community in Chhattisgarh state, close to The Leprosy Mission’s Champa Hospital. She’s been living there since she felt forced out of village where she grew up, when her husband rejected her because of her leprosy. Sharidah had been suffering the effects of the disease for some time, but it was when they became visible, with damage to her hands and feet, that he threw her out and kept her from seeing their children.

Thankfully now they’re grown up, her children ignore the negative attitudes surrounding leprosy and often come to visit, making sure Sharidah is part of her grandchildren’s lives. For some years now she’s been part of a self-help group that has enabled her to set up a small grocery store and earn a regular income, but sadly, the stigma of leprosy still remains. Sometimes people don’t want to shop there because of her disabled hands and feet, so her customers are mainly other people affected by leprosy.

Sharidah in her shop
Sharidah in her shop. Photo: Hassan Nezamian

When we first met Sharidah, we soon realised she had a real passion for creating change in her community. She was keen to improve life for other people affected by leprosy because, as she told us, she wants to ‘give something back’ when The Leprosy Mission has done so much to help her in the past.

Sharidah was excited to learn about the ways the CREATE project would be working in her local area. The aim of CREATE is to combat stigma and discrimination and improve life chances for people affected by leprosy. Part of this involves training up people to become ‘leprosy champions’ who can become advocates for those around them. It was clear from talking to Sharidah that she would be an ideal leprosy champion for the village – and she was more than happy to help.

When we visited the village again recently, it was amazing to see first-hand the difference Sharidah has been helping to make. Her enthusiasm to see change happen means that this year, the community will have a piped water supply for the first time.

Around nine years ago, a new water tower was built on the edge of the community. It was built to supply the whole of the surrounding area, but the leprosy village was not included in this, leaving residents without a pipeline. Sharidah’s self-help group wrote to different local government offices seeking answers but received no reply.

Eventually, they were promised that work on a connecting pipeline would soon start, but once the work had started it was soon put on hold. Sharidah – now trained as a leprosy champion – and her friends organised protests at the water tower and got in contact with authorities once more to explain why clean water is something everyone should have access to and why leprosy communities should not be forgotten about.

Before long, they saw success. Work on the pipeline started up again and Sharidah told us she was confident that it would be completed this time. If not, she already has plans for a new campaign! When finished, the pipeline will bring water to a communal tap in the village and eventually, will pipe water into individual homes.

Sharidah’s success in making change for people affected by leprosy shows just how much of a difference leprosy champions have the potential to make – and what can be achieved by people standing on behalf of their communities against discrimination. Thanks to you, many more people like Sharidah will be trained as leprosy champions – and many more lives will change as a result.

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Sharidah with CREATE project staff

 

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Jutlen’s transformation

Some of the postcards you sent to Jutlen last summer
Some of the postcards you sent to Jutlen last summer

Helen Walton reflects on a very special reunion.

Do you remember Jutlen? Last summer, our appeal focused on Premananda Hospital in Kolkata, India, sharing his story. Jutlen was a 16-year-old boy alone in hospital, fearful for his future, in need of surgery on his hands and feet and deeply upset by the stigma he had suffered because of leprosy.

I, too, remember the day I met Jutlen, because it changed my life forever.

Jutlen, on the day I met him at Premananda Hospital in Kolkata.
Jutlen, on the day I met him at Premananda Hospital in Kolkata.

As I sat on Jutlen’s hospital bed, looking at the harrowed expression on his face as he told me his story, I saw such pain and hopelessness that it has haunted my heart ever since. I wept for this young man, for the injustice he has suffered and for his pain.

His parents had died and his best friend had refused to have anything to do with him once Jutlen told him he had leprosy. Although he was cured of the disease, he was alone, disabled and scared for his future. I left his bedside that day full of sadness for him and for his situation.

As part of last summer’s appeal, we asked you to send Jutlen and others like him your prayers and messages of support. It was wonderful to see the outpouring of love for this young man. Your good wishes for his future meant so much.

Returning to Kolkata recently, with a couple of hours to spare before my onward flight, I returned to Premananda Hospital. I was overwhelmed with curiosity as to Jutlen’s whereabouts. Where was he? How was he? As I was escorted to the men’s ward, I saw him. One of his legs was in plaster, indicating that he had recently had an operation – the reconstructive surgery he so badly needed to help him walk properly again.

Jutlen was completely transformed
Jutlen was completely transformed

What I hadn’t expected was the complete transformation that I saw. It wasn’t just the physical transformation – Jutlen’s smile was infectious; he was animated and excited to see me. Slowly he got off his bed, then knelt and touched my feet and knees, a gesture of thanks and gratitude.

Through the loving care he has received, all thanks to you, Jutlen has found hope again. In just a few short months his life has been turned around. He is healing from the effects of the rejection he felt and was looking forward to returning to education on leaving hospital.

It made my day to be able to spend time with Jutlen.
It made my day to be able to spend time with Jutlen.

When you supported Jutlen and others like him at Premananda Hospital, you helped turn a young man’s life around. Because of your kindness, Jutlen has found new hope. I’m so thankful that I got the chance to meet him again and see this for myself – and I couldn’t wait to share the news. As he rebuilds his life, please continue to remember Jutlen – as well as the other patients and staff at Premananda Hospital in your prayers.

The least of these

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Ali has suffered a lot of stigma as a result of leprosy. The damage the disease has caused to his hands means he can not work.

Regional Manager Jarrett Wilson reflects on his recent visit to Nigeria.

Imagine a destitute community with unsafe buildings amidst uncollected rubbish, ravaged by unemployment and disease. The air is heavy, thick with heat. Dust kicks up as motorcycles travel past uneven, pothole-riddled lanes. Behind the haze are similarly dishevelled houses, banked onto decaying slopes. There are piles of litter everywhere, while streams of dirty water snake through junctions and behind walled corners. Wherever water and rubbish meet, stray dogs come panting for relief from the relentless heat as they scavenge restlessly.

That’s Dakoko, a slum neighbourhood in Minna, Nigeria, where people affected by leprosy strive to live alongside those without the disease, themselves marginalised and outcast.

But no-one wants to eat the food they cook, and few make any attempt to bridge the divide and befriend someone with leprosy. Those living here with this disease are outcasts in a community of outcasts, another example of how we see, again and again, that people affected by leprosy are the poorest of the poor.

Zachary, whose 50 years of living with leprosy have left him severely disabled.
Zachary, whose 50 years of living with leprosy have left him severely disabled.

Among them sits a 70-year-old man, sheltered in the dark of his tiny home. His name is Zachary, and he has been afflicted with leprosy since the 1960s. Cured of the disease, but with no sensitivity in his extremities, the ravages of the bacteria are evident in the stumps ending each of his arms and legs. Zachary no longer has any fingers. His feet are gone. His ulcers slowly weep into thick bandages, prepared and regularly applied by Leprosy Mission staff.

Beside him sits one of his only friends, Ali, who is also affected by leprosy. His hands are clawed, making it difficult for him to work, but he has newfound purpose as informal carer for Zachary. Now in his 40s, leprosy snatched his life as a herdsman away. Friends shunned him. His wife deserted him.

The Leprosy Mission came to his aid and cured him of the disease, but they are still working daily to help his sense of despair and prevent his disabled hands and feet from developing further problems.

Sitting before them both, the temptation is to feel numb, to succumb to the same cynicism sometimes encountered when leprosy callously steals one’s opportunities and ambitions. There is no ‘quick fix’ for their problems. But to give into cynicism would betray Jesus, whose face appears so starkly and formidably on the faces of Zachary and Ali. The words of Jesus, recorded in Matthew 25:40, offer a challenging corrective: ‘whatever you did for one of the least of these brothers and sisters of mine, you did for me’.

We choose to look into the faces of Zachary and Ali, and to see Christ. In that moment, the heat and dirt, the sweat and grime condense into a fixed point, claimed by and for Christ. When as we clothe and feed and visit and care for these neglected among neglected, we do it for Jesus.

In a tiny, dark corner of Dakoko, the healing ministry of Jesus is being birthed again.

As you pray this week, please remember Zachary and Ali and pray

  • that people affected by leprosy in places like Dakoko are embraced by the communities in which they live
  • that The Leprosy Mission would encounter open doors to bring education and awareness to marginalised communities about the facts of leprosy, raising awareness and combating stigma
  • that all work carried out by staff and volunteers there would demonstrate the love of Jesus