Dr Helen Roberts speaks with Rajeev

For Rajeev, the cure for leprosy is a gift more precious than gold

Lizzy Standbrook recently accompanied a medical outreach team to a remote area of West Bengal, India, on a mission to find and help people who would otherwise have no access to medical care.

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Docking at one of the remote villages in West Bengal where medical outreach teams travel to find new cases of leprosy

On the day we met Rajeev, it took nearly all day for the outreach team from Premananda Hospital to travel by train, jeep and boat from Kolkata to his village.

Leprosy hides in remote villages like the one where Rajeev lives. There is no medical care readily available and people live a hand to mouth existence. For most of them, affording the journey to a clinic or hospital further afield is unthinkable. There is little awareness of the symptoms of leprosy. And so cases of the disease often go undetected, with devastating effects.

My overwhelming feeling is how exhausting running these clinics must be for Dr Helen Roberts, Superintendent at Premananda, and her team. In addition to treating the hundreds of people turning up every day, there is all the packing and unpacking, carrying cases of supplies, lifting them in and out of cars and boats. That day some of this was done as torrential rain fell and thunder crashed overhead.

Setting up the outreach clinic in Rajeev's village
Setting up the outreach clinic in Rajeev’s village

Opening up their outreach clinic in a disused school building, Dr Helen and her colleagues set up tables and unpacked boxes of medication. One desk for eye problems, another for diabetes cases, a big problem in the region – and a desk for skin issues, where people with suspected leprosy would be seen. A crowd quickly began to gather and I soon understood why – no doctor had visited the village for ten years.

Incredibly, 300 people came to the clinic that day – more than we had ever expected. People queued around the room. Suddenly, we were called over to Dr Helen’s table. She was examining the torso of a man – Rajeev – who had arrived with his 12-year-old daughter. Straight away I noticed the tell-tale patch of lighter skin covering some of his chin. Dr Helen pointed out lesions on his arms and showed us that Rajeev’s daughter had them too.

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Dr Helen Roberts speaks with Rajeev

Rajeev told us that he didn’t live far from the clinic and that he was worried about his wife and other children. Could they all have leprosy? There is certainly a risk to other members of a family once one member has the disease. Dr Helen decided that we would visit their home once the clinic was finished so she could examine everyone. If she had reason to believe that Rajeev’s wife and children had leprosy, the whole family would be taken back to Premananda Hospital for treatment.

Rajeev could never have afforded the cost of the journey to hospital in Kolkata and this is why so many cases of leprosy  never receive the treatment they desperately need to prevent disability. But thanks to the dedication and servant hearts of Dr Helen and her team, people like Rajeev receive the precious gift of the cure, stopping leprosy from ravaging their bodies.

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Dr Helen examines one of Rajeev’s daughters at the family’s home

They are so committed, going where no other medical professionals will go, caring for people who are marginalised and often so stigmatised due to the prejudice surrounding leprosy. For people like Rajeev, they are a lifeline – and I was in awe of how far they would go to make a difference.

This Christmas, support Dr Helen and her team as they reach more people like Rajeev with an incredible gift. A gift from you of £24 could find and cure someone before leprosy can do its worst, changing their life forever. Please help today.

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“I just wanted to die” – living with leprosy in Myanmar.

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Than Lwin – © Paul Salmon

Myanmar is one of just 16 countries in the world still reporting more than 1,000 new cases of leprosy every year. Stigma and disability are still enormous problems there, as profiled in this recent Guardian article. The Leprosy Mission is working hard to transform lives there, but one of the most simple things we can do – and that you can play a part in – is treating people affected by leprosy as early as possible, curing them of the disease before disability takes hold.

Every time we meet people like Than Lwin, we remember why swift diagnosis and treatment is so vital. The 69-year-old developed leprosy about 40 years ago.

It all started with him being unable to feel his fingers;  then he began to experience loss of sensitivity on his body. Unfortunately, this led to his torso being badly burnt while he was bending over an open fire – he simply couldn’t feel what was happening. He later worked in the fields but using a scythe to cut grass meant he cut off and damaged some of his fingers and toes, leading to him becoming severely disabled.

About 21 years ago he was finally diagnosed with leprosy when a medical team visited his village. The Leprosy Mission provided him with multidrug therapy (MDT). He had lived with the illness for 19 years at that point without knowing what was wrong with him, but was finally receiving the cure.

Before his diagnosis Than Lwin said he felt like he ‘just wanted to die’. Because of his disabilities, people did not want to come near him, even crossing to the other side of the road to avoid him. For much of his life he has been isolated and lonely.

“My saddest memory is when I offered a monk some food, just like other people do,” he said.

“The monk took the food but when he thought I was not looking I saw him throw it away.”

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Than Lwin’s hands and feet. He is wearing protective footwear supplied by The Leprosy Mission – © Paul Salmon

Now that stigma in his village has been broken down thanks to The Leprosy Mission’s work, he feels happier about his life. He has gained enough confidence to start attending community meetings and finally feels included.

He is also good friends with two other men affected by leprosy and the three regard each other as ‘brothers’, supporting each other and going to social events together.

Talking about when he was first diagnosed with leprosy, he told us: “Even though there was medicine I didn’t want to take it – I just wanted to die. Since you have helped me, life is worth living again.”

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Ye Ye Shin – © Tom Bradley

Sadly, some people affected by leprosy feel less hopeful about their lives. 39-year-old Ye Ye Shin developed leprosy aged 10 but was not diagnosed until several years later. She has spent most of her life carrying the burden of stigma alongside one of her brothers, who is also affected by the disease.

“I don’t want to get married because I don’t want to bring trouble to other families,” she told us. “When two of my siblings got married their in-laws were not happy to learn that their children had married into our family.”

Ye Ye Shin’s other brother is a farmer but she does not work with him as it makes her ulcers worse. She sometimes goes to social events in her village but doesn’t venture further afield because she is worried how people will react to her.

She dreams of one day having her own business but so many things have made life tough for her – her disabilities, her family’s poverty, and the terrible stigma of leprosy.

There are many more people in Myanmar who have yet to be diagnosed with leprosy. For them, the cure can mean a life free from much of the pain suffered by people like Than Lwin and Ye Ye Shin – the stigma, the struggle to earn a living, the sadness.

Did you know that as little as £24 can cure someone of leprosy and transform their future?

How many people could you cure? Donate today and change a life forever.

Providing the key to Sambaji’s future

Bati, Raj and Sambaji Kumari
Bati, Raj and Sambaji Kumari

Charlotte Walker met Sambaji and his family on a visit to India last year. Here, she explains how his life has been affected by leprosy, but also how it could be transformed.

Sambaji and his brother Bati blended into the melee of outpatients waiting outside The Leprosy Mission’s Barabanki Hospital on a bright winter’s morning.  Wearing a red felt jacket several sizes too large and mismatched shoes, eight-year-old Bati stuck to his older brother’s side.  The pair had left Indranagrar slum in Lucknow at daybreak and, several buses later, arrived at Barabanki’s bustling outpatients department.  They say the British are good at queuing but not compared with the Indians.  There appears to be no such thing as hospital appointment systems.  People are simply pleased to be seen and patiently wait for however long it takes.

Sambaji, 14, and Bati have nine siblings.  Their mother Raj was recently diagnosed with leprosy at Barabanki Hospital and had been encouraged to check all her children for tell-tale patches on their skin.  It emerged Sambaji and Bati had fallen prey to the disease and the three of them were being treated, free of charge, with multidrug therapy (MDT).  But while Raj and Bati were fortunate enough to escape disability, Sambaji’s hand has begun to ‘claw’.

Sambaji is lucky though.  He comes from a poor yet supportive family and neighbourhood.  We gave him and Bati a ride home from clinic and were escorted through the slum , followed Pied Piper-style by a throng of children, to the Kumari family home.  What from the road appears to be a dismal, grey and, I wrongly surmised, stinking and squalid settlement was actually a well-tended community with a distinct sense of pride.  Neat channels connected clusters of make-shift shelters and there was a sense of trust and acceptance between those living there.

Outside of Indranagrar slum
Outside of Indranagrar slum

Inside the Kumari home the bare floor was swept clean and the few items of clothing owned strung from the ‘frame’ of the house.  The family’s possessions amounted to a few cooking utensils and a pair of garden chairs on which a couple of members at a time could sit and watch the world go by.  It did occur to me that there scarcely seemed room for the entire family to lie down and sleep.  Perhaps the same system operated.

Sambaji and Bati’s parents made their way home from work hearing en route visitors awaited them.  Sambaji’s father is a rickshaw driver and his mum a cleaner. They were welcoming and, as if from nowhere, the entire Kumari family congregated, happy to be united at the end of the day.

Despite stigma surrounding leprosy being rife in India, the community appear unphased by Raj, Sambaji and Bati’s predicament.  But because of his clawed hand giving away his leprosy status, Sambaji’s life is on the cusp of being ripped apart.  While the MDT is ridding his body of the disease, his hand is destroying any chance he might have of becoming self-sufficient.  Uneducated, his prospects are limited.  But his hand is his biggest obstacle and is already causing him to be thrown out of cleaning jobs unpaid when an employer clocks it.  The 14-year-old has grasped that his future will be tougher than that of his siblings.

Sambaji’s only hope is The Leprosy Mission.  It is hard to believe that reconstructive surgery can restore mobility to his hand.  And despite his lack of basic schooling, there are skilled jobs that Sambaji can train to do at one of The Leprosy Mission’s six vocational training centres in India.  It is humbling to know that somewhere in the heart of an Indian slum, a young boy holds onto this hope as the key to his future.

Charlotte in Indranagrar slum
Charlotte spends time with Sambaji and his family