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Leprosy One woman’s fight to combat stigma

Focus on: Challenges of treatment in India and Bangladesh

Spotlight on:

September 2010

Our work in Guatemala

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LEPRAnews Dear Friend, It is a bittersweet moment for me writing this last introduction to an edition of LEPRA News as I retire in September, but I am very much looking forward to seeing how the growth continues with Sarah Nancollas my successor. I know you will welcome her with the same warmth you have shown me. The last twenty years have seen many changes in LEPRA, both in the number of programmes we support and in the countries we work in. Year on year we have helped more and more people with an increasing number of diseases and conditions – all thanks to you. It has been a real honour to work with LEPRA Health in Action and I will take away some wonderful memories of my time here. I have met some truly remarkable people, and have seen tremendous kindness and understanding. Enjoy this issue of our newsletter.

September 2010

In this issue... News

3

Cover Story

4

One woman’s fight against leprosy stigma

Country Focus

6

Difficulties of diagnosis in Bangladesh

Programme News

8

LEPRA’s work in Guatemala Love in the time of TB

Fundraising News

10

Remembering LEPRA in your Will Fundraising stories

Programme News

12

Leprosy and TB research Terry Vasey CMG KLJ Chief Executive LEPRA Health in Action

Community News

14

Case Study

16

Horacio’s experiences of malaria Editors Joanna Belfield Irene Allen Contributors Terry Vasey – Chief Executive Raja Ahmed - Programmes Officer Jose de la Cruz - Programmes Officer Nazma Kabir - Programmes Director Ceri Angood - Programmes Officer Fiona Cook - Programmes Officer Alicia Mills – Programmes Assistant Joanna Belfield – Marketing Officer Liz Radley - Events Manager Penny Norris - Trusts Fundraiser Ros Kerry - Community Fundraising Photography Peter Caton LEPRA Health in Action Design and Print The Print Connection, 01473 810230

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LEPRA

healthinaction Reg Charity no. 213251 Charity registered in Scotland no. SC039715

Dates for your Diary 2010-11 World AIDS Day 1st December

London Marathon 17th April

Supporters’ Trip 21st Jan - 1st Feb

BUPA London 10K 30th May

India Bike Ride 22nd Jan - 6th Feb Adidas Silverstone Half Marathon 6th March

LEPRA Health in Action 28 Middleborough Colchester CO1 1TG 01206 216700 www.leprahealthinaction.org

Malawi Bike Ride 18th June - 4th July Madagascar Bike Ride 21st Sept - 7th Oct

For more information about these fundraising events, please email events@leprahealthinaction.org or telephone 01206 216799. More details are also available on our website.


LEPRAnews

Faces of hope: reflections on improving health and livelihoods by Terry Vasey

Terry Vasey, 20 years fighting for a cure

When I spoke at our Annual General Meeting recently, I showed several images which have stuck with me over the years I have worked with LEPRA, some of which you may remember.

The first was Santosh who we found many years ago in the Indian state of Orissa. Santosh was a child with severe deformities caused by leprosy. His elder brother had died of cerebral malaria and his mother was unable to care for him. He became the best known of all the children we have worked with over the years as he personified all that we were trying to do. Some of the images I used were more recent, and showed people with tuberculosis, and some affected by HIV/AIDS or by lymphatic filariasis. In all of the photographs were people who came to LEPRA with hope, and they all went away with their health situation vastly improved and on their way to a cure. Many were helped not just through treatments and surgery, but also with a new start in life. Santosh became a ward assistant in our surgical unit for example. Some started small businesses while others were helped to develop new skills. This enabled them to go back into employment. Many who had lived by begging no longer had to do so. Of course all this was done by a superb group of dedicated men and women who work under some of the most difficult conditions imaginable with such a wonderful will. Patients and government staff comment not only on the skill of our people, but on their kindness, gentleness and the empathy they have. I have said this so many times before, but it is always worth repeating that we could not do any of the work we do without your help. You can and do change people’s lives, and on behalf of all of us I want to thank you most sincerely for your support.

Sarah Nancollas will continue LEPRA’s success

Meet our new Chief Executive Sarah Nancollas ‘Hello, I’m Sarah Nancollas. I am delighted and excited to be joining LEPRA Health in Action as the new Chief Executive from September. I have not necessarily travelled a conventional route to get here but can claim a wealth of experiences along the way. With a degree in civil engineering, I worked in industry for ten years as a logistics manager before taking leave from BP to work in the Ministry of Health in Ghana. Within six weeks I realised that I would not return to the corporate world! After five years running projects for Save the Children, I founded the international transport NGO Transaid. After six years there, I spent six years as Chief Executive of Canon Collins Trust. In my spare time I am a trustee of the DHL UK Foundation and Skillshare International. An avid sports fan, I am a member of Surrey Cricket Club, travel with the UK athletics team, and try to attend a F1 grand prix each year. I’m hoping that my move to the Essex countryside will allow me more time for landscape photography without having to get up so early!’

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coverSTORY

Sobita weighs the outer husks of rice removed by her machine

Sobita Rani – one woman’s life dedicated to combating stigma Some people refer to leprosy as a fight against two diseases – leprosy itself and the stigma it sadly brings with it. Leprosy has long been considered to be both a malady of the body and a disease of the soul. In many parts of the world, it is still believed to be the result of immoral behaviour in a previous life. This conviction is often so strongly held that a person affected by the disease will struggle within society for much of their life – feeling ashamed and trying to hide their symptoms for fear of social repercussions. A delay in treatment increases the risk of disabilities, which in turn perpetuates the stigma. The following story shows the extraordinary way in which one woman went from being the outcast of her community to a pillar of strength, raising

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awareness about leprosy with the determination to change the misinformation and misconceptions prevalent in society about the disease. In a small village of the Sirajgonj district, in the north western part of Bangladesh, there is a little house where a lady, cured of leprosy, sits patiently at her rice husking machine. She sees her much-loved machine as a wheel of fortune – without the support of LEPRA she certainly would not be able to use it so easily. This is the story of Sobita Rani, 50 years old, a wife, a mother, and a true fighter in the battle against leprosy. Her determined expression and resolute eyes provoke a sense of curiosity in anyone who meets her. With undeterred concentration, she works away at her rice husking machine, day-in, day-out, as those around her watch in amazement. Sobita tells the story in her own words:


coverSTORY ‘I used to have a very happy family life with my husband. Then suddenly my life changed with the discovery of red patches on my body. My husband called me a sinful woman and decided that he no longer wanted to share his life with me. Our previously happy marriage ended a few months later. I was left all on my own. I consulted some traditional village healers who gave me treatment for more than a year. Then, one evening, I just happened to watch a film show organised by LEPRA in the village. I learnt about the signs and symptoms of leprosy, and found out where I could get treatment in my area. I managed to contact one of LEPRA’s staff members who guided me to the nearest LEPRA supported treatment facility. I was diagnosed with leprosy. They told me that I had a high concentration of bacteria in my body. I was put on multi-drug therapy treatment and after a year the leprosy was completely cured. However, my story does not end here. I really wanted to do something for all those women who faced the same problems as I did because of leprosy. I knew that if I could raise awareness of this disease within my community, I could really make a difference to women’s lives – before they found themselves abandoned and scared. I think that was why I

decided to become what I like to call a ‘leprosy combatant’. It’s amazing that even in the 21st century, leprosy patients are still sneered at and stigmatised. I was determined to change the perceptions of people. I imagined a world where people would care, not stare. So I started by encouraging other former leprosy patients in the village to form a community group with the aim of helping others with leprosy. Our group is really active now, and we meet regularly in the market place to discuss issues and responsibilities. We have also started saving money so that we can give out loans to other group members. We asked LEPRA to guide us in forming the group, and they also gave us some training on how to raise awareness of leprosy in the community. I am proud to be the only female member out of the ten others who participate in the self-help group. I go door-to-door, raising awareness of the disease as well as organising meetings with men’s and women’s groups in order to tell them about leprosy and give out information concerning available treatment.’ Sobita’s story is one of strength, passion, commitment and determination. Thank you for making it possible for us to reach thousands of people like Sobita, and helping them to turn around the fortunes of others.

Sobita tells groups of leprosy and TB cured males ‘do not stigmatise women’

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countryFOCUS

Bulbule refers herself for a diagnosis with son Simul

Difficulties of diagnosis in Bangladesh and India Jose de la Cruz reports from a visit to our field office in Bangladesh ‘I observed medical staff check a muslim woman for leprosy. She was wearing a burka. What surprised me was not the burka but the relaxed attitude of the woman. When she was asked to remove her burka so she could be examined, she nonchalantly obliged. I expected hesitation and even refusal from her but I witnessed compliance and understanding that removing her cover was necessary for her health. The woman turned out to be free from signs of leprosy’.

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Although this particular experience affirms the power of intensive education to change people’s attitudes about seeking treatment, sadly this is often not the case. The reality today is that women face many barriers which prevent them from accessing information, testing and treatment - least of these is the veil. In our experience this is true of most women regardless of religion or culture. Of the disadvantaged women, those from the lower castes and from tribal communities face the most difficulties.


countryFOCUS In LEPRA’s work in India and Bangladesh, much has been done to address the difficulties of promoting women’s access to health. We have an initiative which encourages gender empowerment, involving women in decision-making that affects their lives. We work to support the formation of women’s groups for self-help and advocacy. Much has been achieved with some projects registering as high as 67 per cent involvement of women from lower castes and tribal groups. Furthermore, 27 per cent of these women have leadership roles in their community groups. While advances have been made, much still needs to be done. An immediate area of concern is the lack of female field workers. Women in India and Bangladesh, as in most countries, prefer to be examined by women. The shortage of women field workers poses a barrier for women to access services. In Bangladesh for example, we have been trying for years to recruit female field workers but with little success. Of more than 80 field staff, only three are women. The lack of female field workers is a complex issue caused by the inequity of the education system, which favours males over females. This problem also exists in India. Other issues preventing women from field work include the burden of child care, security while working in rural areas, and the long time they spend away from their children. People from rural areas are often unsympathetic or even suspicious of women working on their own in the field for long periods of time. Addressing these problems will take a long time but there are immediate steps being taken. The key is to promote the importance of women’s support groups based in their own community. By encouraging female local leaders, we ensure that women have a say in health programmes and they play a role in making health intervention responsive to their needs as mothers and, in some cases, as head of the family. By training women on detecting different diseases and how to refer them, we help ensure that people are diagnosed early, which prevents long-term disabilities, mortality, and reduces the spread of infections.

Currently our pioneering approach for promoting female participation is the formation of self-help groups and village health forums. These local groupings are community based and have been effective mechanisms for helping women feel part of a group. They feel that they have support within their communities. The groups enable access to various government schemes. Often these groupings have helped women improve their self-esteem as they receive training and mentoring on leadership and health from LEPRA and government staff. Effective as these initiatives are, reaching women and other vulnerable groups needs sustained support from the government and civil society organisations. Special emphasis should be given to the education of women and children. Programmes should be developed to train women as field workers. Flexible working arrangements for working mothers should be introduced so that they can care for their families while, at the same time, work effectively. Arrangements should be made for improving security for female volunteers and staff while doing their field rounds to rural and isolated communities. The experience with the woman wearing the burka showed that once women become motivated to take care of their health, they will put aside the cultural barriers that exist. In so doing, they will be able to access the early diagnosis they need to prevent disabilities.

So often the case - Hasibah receives diagnosis from a male doctor

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programmeNEWS

More than malaria. LEPRA’s work in Guatemala Tom - community volunteer on a mission to clear mosquito breeding grounds

LEPRA has worked in Guatemala since 2005. The initial years were spent addressing malaria, the biggest threat to maternal and newborn health in the country. After five years, LEPRA has made significant progress in the control of this devastating disease and has the results to prove it. Since 2008, LEPRA has expanded this successful malaria project as well as starting a new project addressing the rights issues of the indigenous population for accessing basic health services. Now we need new funders to take LEPRA’s work in Guatemala to the next level. Dr Nazma Kabir, LEPRA’s Programmes Director, recently visited LEPRA’s work in Guatemala and said: ‘I saw the impact of our work in the reduction of malaria and the changing behaviour of the community. We have also built the capacities of government health staff through training and by developing their supervisory skills. The project also witnessed changes in the behaviour of individuals, volunteers and staff. They were positive in their approach towards cleaning the mosquito breeding ponds without the use of chemicals, they adopted the use of bed nets, keeping the environment clean, and promoting blood testing for those showing the basic symptoms of malaria.

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The malaria project has been truly integrated into the existing health system. Due to the way in which the malaria staff were working with the community, and making presentations of their achievements and sharing their experiences with us, it never occurred to me that they were actually government staff rather than LEPRA staff. The trend in malaria cases from 2005 to 2009 has decreased in Ixcán. The number of blood samples actively sought has increased, which is an important element of malaria reduction. This intervention model is about controlling malaria through an integrated approach by supporting the government health providers to work closely with the community. This is achieved by good planning, advocacy, working together, building confidence and capacities of community volunteers, community groups and malaria staff. The model also recognises the issues of quality, impact and sustainability of the project. The learning from this successful project will not only help us to replicate the model in other municipalities or departments in Guatemala, but also to work on other diseases spread by mosquitoes, such as dengue or leishmaniasis, and can perhaps be used in other countries.’ Overall, Dr Kabir summarised the malaria work as ‘a simple and effective project.’ You can’t say fairer than that!


programmeNEWS

Love in the time of TB Pompilio and Salida, both 25, come from Mbawa, in the south-east of Namacurra district in Mozambique. They met six years ago and soon after, married and had their first child. Around Christmas last year, Pompilio began coughing violently and continuously. He lost his appetite and every time he caught sight of his own reflection, he was shocked at how thin he was. Eventually Pompilio had to stop working in his rice field. Salida had told her parents that she was very worried both about Pompilio’s health and how they would make enough money to eat, so one day her parents arrived at the house to check up on them. On seeing how ill Pompilio was, they decided to take Salida and their grandson back home with them to their village 10km away. They had to protect them from Pompilio’s mystery illness. Pompilio’s family started providing care for him instead. Afraid of what was happening to Pompilio, Salida stopped visiting him and they began to live separate lives. Pompilio’s father, on seeing how his son was unable even to sit up, became anxious. He noticed that a health volunteer, Odete, had been visiting the village, and in desperation he asked her to come and visit Pompilio. Luckily, Odete had become a community-based TB volunteer, trained by LEPRA in the DOTS strategy only a few months before. DOTS (Directly Observed Treatment short-course) works by making sure that someone of the patient’s choice - a volunteer, a friend, or a family member – observes and supports the patient during treatment, thereby ensuring that their TB is cured and that they don’t abandon treatment and develop drug resistance. Odete persuaded Pompilio to take a sputum test, which turned out to be positive for TB. He was put on treatment, and although he was worried, Odete reassured and encouraged him, visiting him regularly. Pompilio’s father agreed to

(From left) Pompilio’s father and mother, Odete the health volunteer, Pomilio, Salida and their child and Luis the Social Assistant

become his DOTS provider, responsible for picking up the tablets from the health centre and observing his son taking his treatment every day. Around the same time, Salida started to feel ill and developed a persistent cough herself. Thanks to another local health volunteer, she was also put on DOTS treatment. Salida’s mother cared for her in one house, while Pompilio was being cared for by his father back at their home. A few months later, when both Salida and Pompilio were feeling stronger, they set off from their respective houses to collect their medicine from the health post. As they entered the doors, they caught sight of each other and were overjoyed to see each other again. As they talked, they realised that they had both fallen ill with the same disease, and were relieved to see each other alive, as until this point neither had known of the other’s fate. They were desperate to start living together again, but were worried about the consequences. The nurse and social assistant reassured them that such an arrangement would be fine, and so they decided to return to the house in which they had shared so many happy memories, safe in the knowledge that they were being treated and would recover. LEPRA staff ensured that both Salida and Pompilio understood how TB was transmitted and what the symptoms and additional risks were. They were also counselled and tested for HIV – and thankfully, received negative results. Their child was tested for TB and put onto preventative treatment. They now look forward to a long life of love ahead of them, but will never forget the importance of knowing about TB and spreading the word to fellow couples and families.

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fundraisingNEWS Landmark challenges For some people, reaching a landmark birthday is something they would rather not be reminded of. Others take on the biggest challenge of their lives.

Celebrate with a cure – Stuart’s landmark event

To celebrate his 40th birthday, Stuart Hasler joined our Madagascar Bike Ride. “I was looking for a challenge with a difference; a cycle ride with a purpose… The memories of this trip will last forever.” Three years on, Stuart has recently completed the Great East Swim. Turning 50, Adam Malin took to the streets of London to compete in the Marathon. Despite his incredible fundraising, his training took an unexpected twist. A late injury saw him reluctantly retire. Not disheartened, Adam is now training again for next year. Proving it’s never too late, Alison Sangster and her friend are commemorating their 69th and 70th year by walking 192 miles in a Coast to Coast challenge. We can’t wait to hear how they will celebrate the next decade! Inspired? Let us know how we can help you bring your landmark celebrations to life by emailing events@leprahealthinaction.org or by calling 01206 216799.

The long and short of it

Jeremy Rabin salutes LEPRA supporters

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It never ceases to amaze us how far people will go to support LEPRA. 5k, 10k, half marathon, marathons… Just this year some of our own colleagues have literally taken their work to the limit. Alicia Mills at our head office ran the BUPA London 10K, Dr Walter Lopez of Guatemala ran the Cobán Half Marathon and Julian Briant, a London based trustee, ran the New York Marathon; all raising money for LEPRA. Along with our 23 wonderful London Marathon runners, their sponsorship money has reached over £43,000. A heartfelt thank you to everyone involved.

Nick gets a helping hand from his son Philip

An uphill struggle Pensioner Nick Martin, accompanied by his son Philip and daughter Ruth, ran the Zermatt Marathon, completing “the toughest marathon in Europe.” Starting on a hot, still morning in a deep alpine valley in Switzerland, the course followed a railway track where the family were cheered on by train passengers and the sound of cowbells. The hardest point was climbing 1,000ft over 2½ miles of forest track in 35°C heat. “I had to just keep plodding onwards and upwards, with the occasional helping push from my son or daughter on the steepest sections” Nick recalled. The family trio crossed the line handin-hand to qualify for their finishers’ medals. “I ran for LEPRA because as a retired microbiologist I am all too well aware of the ravages the leprosy bacillus causes. I find it scandalous that poverty condemns so many to suffer from such a curable disease and I know that LEPRA is fighting to treat disease and help rectify this injustice.“


fundraisingNEWS Radio 4 appeal

Legacies improve lives for people like Amshu

Remembering LEPRA in your Will

We are delighted to tell you that LEPRA Health in Action has been selected for the BBC Radio 4’s weekly charity appeal to be broadcast on Sunday 31st October at 7.55am. The theme will be lymphatic filariasis. The broadcast will give us a wonderful opportunity to inform both existing and new supporters about the way our work is helping people affected by this disabling and stigmatising disease in India and Bangladesh. We are currently deciding which celebrity speaker to read the appeal and will provide you with further details on our website.

When a person has just been diagnosed with leprosy, TB, or lymphatic filariasis, their world falls apart. They fear rejection from families and loved ones, from their communities, and many will lose their jobs. They experience isolation, abandonment and rejection. They face disability on both a physical and social level. A few will contemplate suicide. We thank you for remembering us in your Will. We know that by your pledge to remember LEPRA after your loved ones, that the discrimination, isolation and rejection can be removed for many people living in the most remote communities of Asia, Africa and Latin America. The gift to LEPRA in your Will could enable more people like Amshu, pictured, to leave the shadows and live. LEPRA relies on your legacy because collectively, bequests make up a substantial part of our income for funding our work in the field. It is one way of helping us to continue the work you are supporting during your lifetime. We also like to hear your reasons for choosing to remember us. One supporter told us that one incentive was to do with their relationship with the tax man: any money donated to a charity is exempt from inheritance tax. It is really helpful, if like this supporter, you can let us know that you have included us in your Will. We can also update you with aspects of LEPRA’s current work that are of particular interest to you. Please contact Joanna Belfield on 01206 216736 or write to LEPRA Health in Action, 28 Middleborough, Colchester, CO1 1TG.

Santosh waits for his mum while she has treatment

Fundraising for World AIDS Day and World leprosy day World AIDS Day is 1 December 2010. The theme for this year is ‘universal access and human rights’. World Leprosy Day falls on 30 January 2011 and raises awareness of one of the most stigmatising diseases known to man. For fundraising posters, tips and ideas for both of these occasions, please call Nicolette Dawson on 01206 216732 or email nicoletted@leprahealthinaction.org

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programmeNEWS

Leprosy and TB projects continue to be researched at the BPHRC Infectious diseases represent a major health problem worldwide, both in terms of how many people are affected, and how many die as a result. A complex combination of factors play a role in determining both susceptibility to particular microbes and the course that the resulting infection will take. Increasing evidence points towards the role of human genetics in the susceptibility to, or outcome of, infectious diseases. That is why one of the projects at the Blue Peter Public Health and Research Centre (BPHRC) is currently underway. The project’s title is ‘Gene expression profiling in monocytes in multicase leprosy families: the susceptibility genes expression through proteomics approach’. The editors at head office hope that this title makes for understandable reading for you. Bear with us while we attempt to explain the project in layman’s terms. In leprosy, the genes of the people affected play a role through every stage of the disease. Only up to one per cent of the total exposed population actually develop the disease, so therefore it follows that certain genes must cause susceptibility to leprosy. Various genes and regions in the human genome have been linked with this susceptibility to leprosy. However, these were not the same in all populations due to genetic variability. If we can identify the genetic control of susceptibility to leprosy, it will inevitably provide new and more effective tools for the prevention and control of the disease - the most pressing health needs -

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on a global scale. This project is supported by the Indian Council for Medical Research with positive inputs from BPHRC. The research division of LEPRA in India is also setting up a project which aims to operate a virtual Centre of Excellence on multidisciplinary approaches against TB. It is referred to as ‘Multidisciplinary approaches aimed at interventions against Mycobacterium tuberculosis’. This is a bold attempt to establish a close link between national and private research laboratories, universities and hospitals, to serve as a platform for future collaborative and multi-disciplinary work in tuberculosis research. Under this initiative, LEPRA India BPHRC will join forces with the University of Hyderabad, the Centre for DNA Fingerprinting and Diagnostics, the National Institute of Nutrition and other like-minded research and academic institutions in Hyderabad. The Centre of Excellence anticipates finding novel targets for therapeutic interventions for more efficient drugs, and finding possible candidates for a vaccine, thereby reducing the burden of Anti-TB Therapy in the clinical management of the disease by addressing the role of micronutrients. This would additionally enable LEPRA to harness extra research talent to address the challenges faced by infectious micro organisms such as leprosy and TB. The project’s component at BPHRC involves the study of extra pulmonary tuberculosis, and is progressing well in its efforts to enrol patients and collect clinical specimens. Leprosy susceptibility – all in the genes?


programmeNEWS Artistic and optimistic “Search in the darkness for the light of the sky, and see only dark mountains that make me afraid, I want to run and seek comfort, but my body refuses to move, as if stuck to the floor.” Extract from the poem Fear, written by Arcelia Morales. Arcelia is a Colombian poet who has been affected by leprosy for 71 years. At the beginning of this year, we reported on the challenges of stigma faced by those living in a former leprosy colony in Colombia. Today, in eight out of every ten households in Agua de Dios, someone is affected by leprosy. Many people were sent there as children, before treatment became available in Colombia. As a result, they bear the physical marks of the disease today. Despite this, there are many examples of residents who have shown that disability does not mean inability. In January we introduced Arcelia the poet and Victor the painter to you. Here, Programmes Officer Fiona Cook, who recently visited Colombia, tells us their story, as well as that of Jaime. These individuals truly stand out from the crowd – not because of leprosy, but because of their raw artistic talent.

Arcelia: poet Known locally as “Chelita”, Arcelia Morales is 78 years old and is currently living in a home for people affected by leprosy. At seven years old she contracted leprosy and was taken to Agua de Dios.

Arcelia lost her youth to leprosy: “I had suitors”

Chelita began to write aged 25. When her eyesight deteriorated, due to leprosy, she would compose poems in her head and then ask her nieces to write them down. As a result of having leprosy, Chelita is now completely blind and has no fingers. She laments that leprosy robbed her of the chance of a youth and love but writing gives her the chance to escape her problems.

Victor: painter and singer Victor Burgos (67) was born in Agua de Dios. He contracted leprosy as a small child. He experienced problems with one of his hands which began to “claw”. At school Victor excelled in tailoring, but as his leprosy continued to develop untreated, he lost sensitivity in his hands and had to give up. Victor spent time in hospital due to leprosy. He now feels better

At 28 he discovered a love and talent for painting. Soon after, Victor sold his first painting and his work was selected to feature in an exhibition in Paris. He now paints weekly and has also recorded a CD of traditional songs.

Victor explains that his painting provides him with an occasional source of income and enables him to escape his problems and leave his thoughts of leprosy behind.

Jaime: writer Jaime is the Director of CORSOHANSEN, LEPRA’s partner in Agua de Dios. When Jaime realised he had leprosy, he felt sad, alone and powerless. He fell into depression and stopped taking care of himself. Due to the lack of feeling in his hands and feet, Jaime continued to injure himself causing disabilities, which worsened over time. Today he Jaime: “It’s important experiences severe disability in his hands. Despite this, he found the not to self-stigmatise or strength to begin work as a reporter. He created his own newspaper and be ashamed” co-founded CORSOHANSEN in 2002. In Jaime’s own words: “People who are disabled or affected by leprosy have the same potential as everyone else in society to achieve their dreams.”

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communityNEWS The sun shines on the Edinburgh to St Andrews Cycle Ride 2010

See their logo? Optos cycles for LEPRA

On a bright June morning, 1,200 cyclists set off from Edinburgh with the wind behind them. Many old friends of LEPRA took part, sporting t-shirts from years gone by, a testament to their loyalty to LEPRA and this cycling event. Alistair and Gillian Morton travelled down from Forres and arrived in St Andrews with over 140 years between them; quite an achievement! They also represented LEPRA at the Royal Garden Party at Holyrood Palace, Edinburgh on 13 July. The Alexander family: Richard, Margaret, Sam and Tom made the ride a family day out, with Sam arriving home from University unexpectedly to take part. David Sirman wrote afterwards that ‘summer would not be summer without the LEPRA Bike Ride’. Sylvia O’Dea and Colin Pender left the Band Stand in St Andrews with a cheery ‘see you next year’ and providing us with their sponsorship cheque, Gordon and Alison Milns wrote ‘looking forward to the 2011 ride already.’ The Optos Team (pictured), our biggest corporate team, grows year-on-year. These are just a few of the people that make the ride the event it is for LEPRA. The funds raised this year, as yet unknown, will change lives. Thank you to all who took part and LEPRA looks forward to welcoming you to the next Edinburgh to St Andrews Cycle Ride on 25 June 2011.

The Obituary of Mrs Mary Chibbett 1916 – 2010 Mary Chibbett passed away aged 93 on 6 January 2010. She was a founder member of the Newcastle Staffordshire LEPRA Committee when it was formed in 1955. Mary was a very hard working member of the committee for 55 years, holding the positions of Treasurer and Secretary. She also took an active role in fundraising for the cause. Flag days, concerts, fashion shows, arts and crafts exhibitions and auctions, were just a few of Mary’s highly creative fundraising ideas. During these early and active years, a total of £64,000 was raised. Mary will be remembered for her warmth and friendship by many friends of LEPRA and will be sadly missed.

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Great effort - Colchester school raises over £2,000

Colchester County High School for Girls raises the roof for LEPRA In March 2010, the girls of Colchester County High School for Girls gave a particularly warm welcome to LEPRA. The pupils responded with enthusiasm and commitment to the talks given by LEPRA representative Lesley Gill, and a few weeks later took part in an equally enthusiastic workout, raising a magnificent £2,306. What a wonderful contribution from a school down the road from LEPRA. A big ‘thank you’ goes to all the girls who took part.

Libby Williams workout fundraiser

Libby cleans for a good cause

Tiny St. Luke’s First School in Cleckheaton, West Yorkshire, has 80 pupils, and they took part in a LEPRA workout on 19 May 2010. When LEPRA’s Community Fundraiser, Brenda Cosslett, began to hand out t-shirts to the children, she was particularly interested in Libby Williams, because on her envelope, her Mum had explained that Libby had cleaned the car, tidied her bedroom, did the polishing, washed the dishes and forgone sweets to save up to help cure a child of leprosy. Brenda said: ‘Libby is only five, and we were all moved by her attitude. It was lovely to be able to give her a t-shirt to say thank you to Libby.’


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Please pay the amount indicated on the left to LEPRA Health in Action, Barclays Bank plc, High Street, Colchester CO1 1DD Sort Code 20-22-67 Account No 80151467

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LEPRA also welcomes regular donations via direct debit. If you would prefer to make a regular donation via this method, just call 01206 216700 today and we can do the rest! Please return this form to FREEPOST RLUB-KCXE-ZRRY, LEPRA Health in Action, 28 Middleborough, Colchester CO1 1TG You will save us even more money if you attach a stamp to your return envelope.



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we would like your help ‘I’m Horacio and 12 years old. I go to school in Ixcán, Guatamala. There are 24 others in my class, and we are taught maths and social sciences. Sometimes we have lessons on malaria. One day, I started to feel weak and sick. I couldn’t stop shivering from fever. It was even worse because I had to take a week off school, which meant I missed my classes. I then remembered a talk given to us by a field technician called Domingo. Domingo told us what it feels like when you’ve got malaria. I thought that my illness could be malaria, and even though I felt terrible, I managed to find a community volunteer. He told me that I could indeed have malaria. He helped me to go for a blood test, and gave me medicines. I was pleased to be taking the treatment, especially when the test came back positive for the most dangerous and severe form of malaria. After taking it for a week, I returned to the clinic for another blood test. I was so excited to be told that I was cured, and that I’d soon be able to return to school.

Horacio (12) shares his experiences of malaria

I wondered if I had malaria - and thought that we had no bed nets and the house and outside area was dirty. I remembered that the talk had encouraged everyone to use bed nets, and to keep their area clean. I told people in my area about this – and now my family have bed nets for my brothers and sisters, and we’ve cleaned the pond outside our house. Now we all keep our homes and areas clean. Malaria is a tough disease. It makes you very weak and can kill you too. I’m going to tell everyone I know that if they use bed nets, and keep their environment and ponds clean, they won’t have to suffer like I did. I’m so happy, and my dream is to be someone special in the future’. Please help us to educate more children about malaria and how to prevent it.

Please return the form on the reverse to FREEPOST RLUB-KCXE-ZRRY, LEPRA Health in Action, 28 Middleborough, Colchester CO1 1TG You will save us even more money if you attach a stamp to your return envelope.

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LEPRA News September 2010