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LepraNews Autumn 2013

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In this issue Forgotten people? My doctor – my friend

Protecting Bangladesh’s children Patron: Her Majesty the Queen Registered Charity Number 213251 (England and Wales) SC039715 (Scotland) Lepra is a company limited by guarantee, registered in England and Wales. Registered Number 324748

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LepraNews

Autumn 2013

www.lepra.org.uk

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‘Learning with Lepra’ sums up first reflections of our India projects A mother smiles with her child in Odisha, India

Isabel Cross is our new director of development who brings to us 17 years of voluntary sector and fundraising experience. In this article, she shares her thoughts on her first visit to India.

Madhu shares her aspirations with Dr Arunabala and Isabel

Joining doctors, physiotherapists and other staff for their regular clinics at Nallakunta, I meet many patients with leprosy. Lepra’s specialist skills and medical expertise are apparent as ulcerated feet are examined and carefully dressed. I observe the disabling impact of the condition.

Dates for your diary 2014

In this issue

Adidas Half Marathon Silverstone 2nd March

Introduction Message from Isabel

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Cover story Protecting Bangladesh’s children

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Project news Stigma in urban India

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Fundraising news

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Inside lives Forgotten people?

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Meet the team My doctor – my friend

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How you’ve helped

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Paris Marathon 6th April Virgin London Marathon 13th April Bupa 10K Run 26th May Virgin Active London Triathlon July RideLondon-Surrey100 10th August Great Swims and Great North Runs Various dates and locations Berlin Marathon September Dublin Marathon October

One man, Venkateshwara Rao, smiles and explains his long involvement with Lepra; from his diagnosis 40 years ago, through further help as multi-drug therapy emerged, to the support he receives today. Despite treatment, his disability is the legacy of the disease. “I was treated originally with Dapsone,” he says. “But coming from an influential family the doctor didn’t tell my parents that I had leprosy at all.” His statement strikes me immediately and this theme of prejudice is heard repeatedly throughout my travels. I am inspired by the group led by women for women with HIV. Some have lost husbands to AIDS and with this, their homes and rights. Our peer support extends to access to legal help, baby care kits for new-borns and a fostering scheme where we provide nutrition and education allowances. Sadly, I hear more orphans are waiting for help. However, I am lucky to meet Madhu Sri, one of the girls supported from birth. She tells me: “I am nearly 18 and studying hard, I want to go on and be a doctor”. This feels like a life-changing success. We travel long distances through states of Odisha and Bihar to remote village camps where others have come a long way too, many on foot. Along with our early identification of leprosy and TB, the camps help to teach people with lymphatic filiariasis how to manage their condition and improve the movement of swollen limbs. Our shoe technicians measure for specialist footwear, designs pioneered and provided by Lepra, to protect feet from ulcers and further injury. Something so simple enables people to continue their daily lives. This is but a snapshot. As I meet staff, researchers, outreach workers and state health officers it is clear our expertise is well recognised and our models of work adopted, but overwhelmingly it is the people that are at the heart of each experience.

Lepra India Bike Ride November Editor Joanna Belfield Contributors Isabel Cross Director of development Joanna Belfield Editor Sarah Nancollas Chief executive

Madhavi Sakuru Project officer Nicolette Dawson Communications officer Kate Ixer Digital communications

Blaise Joseph Communications Lepra India Catherine Cherry Project officer Sarah Thompson Events fundraiser

Photography Peter Caton and Lepra staff Print and Design Colchester Print Group/ Barber Jackson

To register your interest in any of these events, please call Sarah or Lizzie on 01206 216799 or email events@lepra.org.uk For more information, go to: www.lepra.org.uk

Madhu (centre) wants to be a doctor

Our Annual Impact Review is featured in the centre pages of Lepra News. Read more about the work Isabel experienced here.

Isabel takes the local transport

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LepraNews

Health education and myth busting

Sumon Hamid is eight years old. At first sight, he is like most of the other boys in his village. But on the skin beneath his shirt is something that threatens to set him apart. There is a patch on his chest.

We visited Sumon’s school to talk about the disease and prevent any teasing. We drove out myths about leprosy through talks, films and health information leaflets. Facts removed the fear.

If medical treatment is all that is needed and is at hand, this is something that should be cured simply and quickly. Fortunately, we were there to help Sumon and, as you will hear, his story is a positive one. But, in the villages of Bangladesh, the situation for those with leprosy is not always so certain, providing leprosy services is often not so simple and the danger of leprosy is not always dealt with so soon. Sumon lives in a village called Debdangar, in north-west Bangladesh - one of the world’s poorest countries and one of the most densely populated. Where there is poverty, there will be disease; where there is disease, there will be social exclusion. In this cycle of poverty-diseaseexclusion, children are especially vulnerable.

Sumon’s story

How we tackle the problem of child leprosy

Sumon used to worry that his sign of leprosy would mark him out as being different. Not anymore. He tells us: “I felt a little frightened at the beginning, but I’m not frightened now.” His grandfather confided that reassurance from Hamil helped him overcome his fears: “Although it was shocking, we were not too concerned that Sumon had leprosy as we now knew it could be treated. Hamil told us all we needed to know about the disease and gave Sumon a six month course of treatment. Listening to his reassuring words put our minds at rest.”

The first step is recognising the signs. A child is unlikely to know the early symptoms, or be able to speak up about it. This situation is compounded by stigma. In groups of children, differences sometimes go unrecognised, but too often different appearances are noted and children can be cruel to anyone that looks different. Children and their parents often prefer to hide signs of disease. This is a dangerous situation for a child with leprosy. We educate families to recognise the early signs and encourage them to access treatment. Where ignorance and prejudice exist, we educate communities about the realities of leprosy and help remove stigma. Without our work, children with early leprosy symptoms risk growing into adults with joint-stiffness and shortened fingers and toes. Mockery from children will later be replaced by social exclusion by adults. Sumon’s story is thankfully different.

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Protecting Bangladesh’s children Sumon is one of around 200 children who will be diagnosed with leprosy in Bangladesh this year. This figure represents only those lucky enough to be diagnosed.

Throughout Bangladesh, we use the slogan ‘take treatment and stop leprosy’. This seems an unlikely lyric for a catchy song, but it has become quite a hit. Sumon breaks into the song and soon all the children join in. The song echoes around the village. School education and catchy songs are just two ways we get our message heard. Debdanger is a great example of how we break down prejudice village by village.

Sumon was diagnosed with leprosy two months ago, and this would not have happened without our presence in the area and the persuasive ability of our staff. Hamil, one of our field assistants, advised Sumon’s family to go to the local health centre for treatment and checked family members for leprosy.

Sumon says that the patch he once hid “was more noticeable, but now it’s fading - so I’m happy”. Sumon is bold in his words and tells all that he is “already cured”.

Autumn 2013

Building on our successes

Young Sumon reads to his grandfather by candlelight

We work to reduce leprosy cases in Bangladesh and to help make childhood a pleasant experience. The number of new leprosy cases registered has steadily fallen to around 4,000 a year, yet significant pockets of leprosy remain. In some districts of Bangladesh, 12 per cent of people are diagnosed with advanced physical symptoms. This statistic applies to adults and sadly to children. Sumon’s story is a positive one, but there is still much for us to do in extending the same success to others.

“I felt a little frightened at the beginning, but I’m not frightened now.” Sumon at sunset

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LepraNews

Autumn 2013

Urban myths

In a recent article in Leprosy Review Dr. Annamma John, of the Premananda Memorial Leprosy Hospital, Kolkata, notes that despite advances in treatment, the efficacy of the tools developed to overcome stigma have not been as effective. This he says is, “Unfortunately, what is holding us back from being able to eliminate the disease once and for all.” He goes on to say, “It is well known that stigma is one of the main obstacles to early detection, and still persists all over the world in varying degrees, regardless of the educational status of the community or individual.

As you can see, his wish has come true. On hearing Suruj’s story, an 86 year old UK cyclist gave up his birthday money and bike themed gifts to buy Suruj a hand trike.

From our twitter community

Well done to our 12 runners who took part in the London and Paris Marathons and the BUPA 10k in the spring. So far, they have raised £13,000.

With 100,000 children and 10,000 adults raising funds for Lepra this year, we wanted to share with you what some of our fantastic fundraisers got up to, in their own words:

We would like to say a big thank you to both the runners and their supporters for spurring them on through the sweat and tears of events training.

“Our experience shows that even in urban areas with relatively high literacy rates it is a significant problem.” This kind of stigma, although irrational in this modern age, comes from fear. “Fear” according to Dr John, “stems from an expectation of social restriction and the ensuing family and economic issues, as well as a dread of disfiguring deformities. There is a general agreement that stigma needs to be addressed at various levels and in combination to be optimally useful.

The RE Department @ JohncoletRE HUGE congratulations to Year 7 with the Maddest, Baddest Hair today!! We raised £80 for @Lepra_HinA 3 more fundraisers to come this term...

We would also like to wish our Berlin and Dublin marathon runners every success with their training and fundraising leading up to these autumn events.

Our 2014 events

“We want patients to self-report, as this is the most cost-effective method of case detection, but this may not happen while there is a lack of robust measures to reduce stigma.”

In 2014, our ninetieth anniversary year, we have a range of new and exciting events, including a Saharan trek, mountain climbs and new cycle rides, plus the five marathon events in Paris, London, Edinburgh, Berlin and Dublin.

Leprosy Review is the leading international journal on leprosy and is published by Lepra. To subscribe visit www.leprosy-review.org.uk.

Tricycle brings independence When you meet 70 year old Mohammed Suruj Miah the first thing you see is his beaming smile and the mischievous twinkle in his eye. Only then do you notice the severe disability caused by leprosy that prevents him from standing and walking. Suruj and his wife run a small firewood business but he is unable to get the best price for his wood as he depends on customers coming to his yard. With no selfpity he explains how he would be able to earn more, and reduce his dependence on his wife, if he had access to a hand tricycle.

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Team Lepra runners

Despite years of health education and publicity about the disease, there are areas in urban India where stigma against those with leprosy is still firmly rooted. This is very worrying. In Kolkata, a metropolitan city in West Bengal, over 10,000 new cases of leprosy were detected in 2010-2011, an indication of the size of the problem.

www.lepra.org.uk

Mohammed Suruj before and after having his hand trike

We also have our very own wonderful Lepra Bike Ride in India, where you can see your money in action by visiting Lepra projects, whilst travelling through rural India on an adventure of a lifetime. See our full range of events on our website www.lepra.org.uk/ challenge-yourself You can now set up your own Lepra fundraising page within our site, get fundraising ideas for arranging your own event, or donate to friends’ fundraising pages securely - all in a matter of clicks!

Currying favour Do you have a favourite recipe and can you tell us about your connection to Lepra? Let your taste buds tell your story, visit www.lepra.org.uk/ supportersrecipes to submit an entry for consideration for our anniversary cookbook next year.

Calling the Blue Peter generation! Were you one of the children who took part in the record breaking BBC Blue Peter appeal for Lepra in 1996/7? Are you a parent who encouraged your child to fundraise? We’d love to hear from you before our next big birthday in 2014. Contact fundraising@lepra. org.uk or join us on facebook or twitter #LepraBluePeter.

Victoria joins our fight Victoria Hislop, author of best-selling novel, The Island, is our new ambassador for leprosy. Victoria’s novel, set on the Greek island of Spinalonga, brought the issue of leprosy back into modern day conversation. “It’s remarkable that one person is still diagnosed with leprosy around the world every two minutes” comments Victoria, “Lepra is a leading authority on community health programmes in leprosy and the impact of their work is remarkable.” Looking ahead to our ninetieth year, we are thrilled to have Victoria join us in our fight against leprosy.

@Susandavis1984 Had a great cycle from Edinburgh to St Andrews dressed as a crayon in aid of @Lepra_HinA

@waldegravegirls Year 7 raise massive £3,273 for @Lepra_HinA and receive charity award @richmondtimes @ twickerati pic.twitter. com/0s1Q2AT2Zt @_CallumJackson We raised £77 by doing a cake sale and all of the money raised for today and tomorrow’s sponsored silence will go to the charity @Lepra_HinA @Michael150670 For my birthday this year I will be cycling from Edinburgh to St Andrews in aid of @Lepra_HinA I can’t think of a better way to spend the day

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LepraNews

Autumn 2013

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Forgotten people? By Madhavi Sakuru

…hopes dwindling and a battle nearly lost Our jeep pulled up on a deserted patch of land next to the National Highway about three kilometres from Adilabad, the headquarters of one of India’s most backward districts. We walked up to a small church in the middle of four other one-storey buildings which were purpose-built to house 16 families of people affected by leprosy. As I walked towards one of the deserted homes, I saw how badly they were damaged – the doors and windows missing and the roofs almost caved in. Entering one of the rooms, I was startled as a rabid dog ran towards me. Luckily Reverend Diwakar warned me.

In 2012, these were the eight residents. A year on, just five remain

Rev Diwakar is a dedicated Christian priest who set up the church in 2003 with funds received from the Abundant Life Ministry of Hyderabad. Twice a year, he distributes Lepra-made footwear to the ex-residents of this leprosy colony and has helped them seek shelter in a government hospital when their houses became uninhabitable. This leprosy colony was built by the government of Andhra Pradesh in 1980. Once built, the government did little to ensure the provision of water, electricity or sanitation facilities. Over time, as the land at the side of the highway gained in value, the residents faced increasing threats to their lives and incomes from local thugs. Many were forced to leave their homes, some migrated to nearby towns to support themselves by begging, and a few went to live with their families. Local businessmen have started to encroach upon the land. Our local Lepra team worked hard to help the residents establish their right to the land but the official documents were untraceable. Together with Rev Diwakar we have met senior government officials and helped obtain improved health care and food rations for the residents but the land issues remain unresolved. A year ago when we first became aware of their plight, eight residents were left and they were forced to sleep overnight in a local hospital for

their own safety. One year on just five remain, with nowhere to go and very little hope left. As we talked I was struck by an overwhelming sense of unfairness, that people cured many years ago of an illness that left them disabled and exiled from their families should have to face such discrimination and fear. Above all though I was humbled by the way they support each other, and the creative ways in which they live with their disabilities.

Adilabad residents choose to remain at the colony despite the living conditions

Nowhere to go: A look inside one of the deserted homes

We are now working in the state with our partners, the Society for Leprosy Affected People (SLAP), to advocate on behalf of the residents for their right to a home and a life free from fear.

…the power of a collective voice and a battle won! In addition to our work with SLAP in Andhra Pradesh, we also work in partnership with Samuttan (the state forum of leprosy affected people) in Bihar. We have helped Samuttan register formally as a community-based organisation, and trained its members, so that the voice of leprosyaffected people can be heard in government departments. When we discovered that 90 per cent of the residents of leprosy colonies were forced to support themselves by begging, we helped members

Mr Kamalesh, President of Samuttan in Bihar, speaking up for leprosyaffected people

of Samuttan to draft a proposal requesting adequate pensions for those disabled by leprosy. We supported them to submit it to the state government, and through six rounds of meetings with government officials and ministers. We were thrilled when the government of Bihar recently announced, on Bihar’s 100th anniversary, that pensions would be increased from Rs200 per month (£2.50) to Rs1,800 (£22.50). Alongside this increase, the eligibility criteria has been rationalised, making it much easier for individuals to prove their right to the pension and the skills development funding available. This type of silent advocacy doesn’t make the headlines, and can be very slow and frustrating for our staff. It is also difficult to raise money for, but has made a massive long-term and sustained difference to the lives of 30,000 people living in extreme poverty in Bihar. It means that they are spared the indignity of begging and will face less stigma and prejudice in the future. It is truly a successful case of giving a voice to people affected by leprosy.

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LepraNews

Autumn 2013

www.lepra.org.uk

My daily routine “Every day I look forward to a beautiful day. At 7.30am, I begin to receive phone calls from patients. Some consult me about their health and medicines. After breakfast, my wife gives me my lunch box; simple curd rice, with some vegetables and pickle. This has been my lunch for 11 years. Then I prepare myself for the day, verifying case sheets and patient records of those who will be visiting me, so that I am ready when they come.” Dr Krishnamurthy examines Mahender’s hands

My doctor - my friend Dr Krishnamurthy, consultant at our Dhoolpet and Nallakunta Referral Centres in India, has a rich experience in public health. Before joining Lepra, he was based at various State and Central government health offices across India. He speaks Hindi, Telugu, Tamil, Kanada, Malayalam, Oriya, Bengali and English, which means his patients can talk easily, in their own language, about their condition and their experiences. Here he shares his experience of working closely with people affected by leprosy and their families.

Challenges and rewards “People come to our referral centres from far off places. Those who come early for treatment are lucky to avoid deformity. But where there is delay in coming for treatment, deformity will have begun. Many local physicians are unable to diagnose the disease. Some people ignore the symptoms until they are unable to bear the pain. They face discrimination and rejection, often from their own family. Leprosy stigma is more difficult to fight than the treatment of the disease. When treating patients, I insist that they bring a family member, because it is very important to counsel the family member first, then the patient. I talk to the family member to make them feel comfortable, assure them that their relative will be cured, and remind them that their support and care is essential. Then, they begin to understand their role and change their mind set. I treat every patient and relative as my friend and build a good

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relationship, so they will talk without inhibitions. I feel happy when I see my patients walk in with a smile and say ‘Doctor I am feeling better.’ Many patients stop taking medication and convincing them to continue taking medicines, makes all the difference. Patients often need to be cajoled.”

Fortunately, his family gave their support and care. Afzar is now cured, very happy, and has started a family business.”

Chandrakala “Chandrakala had ulcers on her feet and experienced unbearable pain. When she came to me she was nervous, anxious and depressed. Her husband had deserted her. I assessed her situation and calmed her. I talked to her about the disease and medication, and said that she will be cured. This made her happy and ready for treatment. Five months on, her ulcers are beginning to heal and the patches have gone.

Afzar “The case of Afzar is a good illustration of my work. Afsar was working in the Gulf and, after four months there, he noticed white patches and red spots on his body. A local physician suspected he had leprosy and informed the Government Health Department. They confirmed Afzar’s diagnosis and sent him back to India. Afzar was dejected and depressed. He had lost his job and had leprosy. When he arrived in Hyderabad, he was afraid to face his parents, wife and child, so he stayed in a hotel and did not contact anyone. He felt humiliated and isolated himself. He feared meeting people, and contemplated ending his life. After days of depression and self-torment, he phoned his cousin and told him everything. His cousin brought Afzar to me and I explained how he could be cured. I told him to contact his parents and tell them everything. If he found this too difficult, I would talk to them.

Chandrakala now talks and even laughs when she receives treatment for her leprosy. Every day, she comes willingly for treatment and even reminds me to do things like check her blood pressure! She has become a confident woman, looking forward to a bright future.”

My friend, the doctor

Dr Krishnamurthy and Chandrakala discuss treatment

While interviewing our doctor, we meet two visitors to the clinic. The first was a young auto-rickshaw driver who tells Dr Krishnamurthy: “Doctor, you saved my life.” Later we meet Mahender, an older man who regularly visits our referral centre. Mahender says: “I have not come to meet the doctor, but to meet my friend Krishnamurthy.”

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We need your help

“With my enlarged leg it was difficult to continue to work, it was hard labour”

Life as an agricultural worker became impossible for Gunanidhi Biswal many years ago when he contracted lymphatic filariasis. “With my enlarged leg it was difficult to continue to work, it was hard labour. I experienced fevers which lost me at least ten days work every month. My leg was swollen to the knee and it was cracked and infected. I felt guilty as my family depended on me.

Gunanidhi happy to demonstrate self-care at camps to save others from feeling unwell

“Three years ago I came to the Lepra camp and learned about self-care practices. I know this disease can’t be cured but at least it is now bearable,” he explains. “Since I have started self-care practice I have had no fevers and am happy to demonstrate self-care at the camps if it saves others from feeling as unwell as I used to. It’s important as it means they can work and feed their families.”

Carefully soaping and drying the creases in the skin he shows how to oil the skin and use anti-fungal ointment between toes and the folds in his leg. He then goes on to perform specially taught massage. “I also try to get exercise and raise my leg as I have been instructed,” he says. Lepra provides self-care kits to help people get into the right habits.

Gunanidhi carefully shows the gathered group of about thirty men and women how to go about the routine. He first washes his ‘good’ leg and then the swollen one.

“This has made a big difference to my life. I know I will have to carry on and do this every day to be free of fevers and to make sure I can still walk and go about my life.”

Please help others like Gunanidhi today by calling us on 01206 216700 or by visiting our website www.lepra.org.uk Thank you.

facebook.com/LepraHealthinAction @Lepra_HinA

Lepra, 28 Middleborough, Colchester, Essex, CO1 1TG Tel. +44 (0) 1206 216700 Fax. +44 (0) 1206 762151 info@lepra.org.uk www.lepra.org.uk Patron: Her Majesty the Queen Registered Charity Number 213251 (England and Wales) SC039715 (Scotland)