LEPRAnews LEPRA Health in Action, improving health and quality of life for people in the developing world.
Practical magic for children Focus on: Fighting discrimination in Brazil
Spotlight on: Giving children back their future
September 2009 www.leprahealthinaction.org healthinaction | 14
Dear Friend, It is 85 years since LEPRA Health in Action (then BELRA) was formally launched. Since then we have grown year upon year and 2008 was no exception; because of our intervention more people were reached and treated than ever before. The global financial crisis is having an effect on us as it is on everyone else, and hopefully the signs of recovery will continue such that our income will lift up once again. We are reminded daily through the many requests for help that we can’t be complacent about the number of leprosy patients still needing care. There are stories in this News that are a harsh reminder that, almost 30 years on from the introduction of multidrug therapy there are still people in remote places who have not had access to treatment and need it desperately. We have built an enviable reputation in those 85 years and with your help we can build on the achievements we have had so far. Thank you once again for all your support.
Terry Vasey CMG KLJ Chief Executive LEPRA Health in Action
Editors Nicolette Dawson Irene Allen Writers Terry Vasey - Chief Executive Yasmin Reyes - Programmes Officer Sonia Martins - Programmes Officer Dominic Baker - LEPRA Supporter Liz Radley - Events Manager Ros Kerry - Community Fundraising Fiona Cook - Programmes Officer Photography LEPRA Health in Action Design and Print The Print Connection, 01473 810230
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In this issue... News
Tailoring health education to children
Another victory in the battle against stigma, Brazil
LEPRA Health in Action 28 Middleborough Colchester CO1 1TG 01206 216700 www.leprahealthinaction.org
Changing the life of a child
Thank you for saving my Vôvô
Dates for your Diary 2009-10 World AIDS Day 1st December 2009
World Leprosy Week 25th – 31st January 2010
Santa Run 6th December 2009
Virgin London Marathon 25th April 2010
India Bike Ride 19th Jan - 3rd February 2010 India Supporters Trip 21st Jan - 2nd February 2010
BUPA London 10K 31st May 2010
healthinaction Reg Charity no. 213251 Charity registered in Scotland no. SC039715
Edinburgh Marathon 31st May 2010
For more information about any of these events, please email firstname.lastname@example.org or telephone 01206 216799. If you are planning an event or taking part in a challenge, the events team would love to hear from you. We offer tips and advice, sponsorship forms and t-shirts to help you fulfil your fundraising potential.
“A world without leprosy” - global strategy 2011-2015
Farewell wishes to stalwart of SJLC surgical unit, Sister Navya
40 National Leprosy Programme Managers from around the world as well as members of the World Health Organization (WHO) Technical Advisory Group for Leprosy, and experts from both international NGOs and organisations of people affected by leprosy met in New Delhi, India in April 2009 to discuss the next global strategy to combat leprosy.
She has been outstanding in her position at the unit, where we carry out corrective surgery on people who have severe deformities of the hands and feet. Thousands of patients have benefited from the loving care of Sister Navya who is absolutely dedicated to those in her charge.
WHO is urging Member States to focus on reducing the rate of new leprosy cases with Grade 2 disabilities per 100,000 population by at least 35% of the 2010 level by the end of 2015. A Grade 2 disability as defined by WHO includes visible damage to the hands or feet such as wounds, loss of tissue, claw hand, or foot drop.
Sister Navya joined the St. Joseph’s convent in 1983 and since 1992 has been working with people with leprosy, tuberculosis and HIV, providing treatment in remote villages as well as running the unit at Sanawad. St Joseph’s is judged by many to be one of the best places to have surgery, not only in the state of Madhya Pradesh, but in the whole of India. Patients are not only given the intensive physiotherapy which is required before surgery, but have equally intensive aftercare which, for some, includes learning to write!
A reduction in this rate would indicate that leprosy is being detected early before nerve damage can develop. WHO is also working to further reduce the global burden of leprosy by 2015, in line with the target date for the related Millennium Development Goal.
We should be thankful to Sister Navya for all she has done, but in her usual self-effacing style she writes: “Before I leave SJLC Sanawad, I wanted to remind you, what a pleasure it was working for people affected by leprosy for the past 16 years. I appreciate your support and management style and I feel I learned a great deal here. I am indebted to you for all the knowledge and experience I have gathered during my stay at Sanawad. I will always remember with gratitude the encouragement I have received from you and shall definitely miss you”. We shall miss you too Sister Navya, and wish you all good things for the future.
Another enhancement to the current strategy agreed by delegates is to reintroduce the examination of all household contacts of newly detected cases. This is something that LEPRA has always advocated and we are delighted that this has been formally recognised within the strategy.
We were very sorry to learn that Sister Navya, Project Officer at the St Joseph’s Leprosy Centre (SJLC) surgical unit in Sanawad (Madhya Pradesh, India) has to move to a new appointment.
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Pulling the rabbit out of the hat?
Practical magic tailoring health education to children Health education is crucial in the fight against disease and poverty. Diseases such as leprosy, TB, HIV/AIDS and lymphatic filariasis (LF) have significant social and economic impacts and it is the poorest who are always hit hardest by them.
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Health education can save childrenâ€™s livesâ€Ś In poor communities children are often the most vulnerable to disease. Malnutrition increases the risk of infection and infectious disease; for example, it is a major risk factor in the onset of active tuberculosis. The severe discrimination children face if affected by leprosy can limit their future opportunities and chances of marriage. Many are orphaned by AIDS or are carers for those affected by diseases of poverty. They can become trapped in a cycle of poverty which leaves them open to exploitation as they become the main breadwinner for their family. This is why LEPRA puts children at the centre of its health education campaigns. Keeping children informed about symptoms, the importance of treatment and where to seek help can motivate and enable them to become a medium for change in their families and communities. Identifying leprosy in time can prevent permanent disability; an early TB or HIV diagnosis can prevent these diseases from being transmitted to others and ensure prompt treatment. These messages can save lives, reduce discrimination and prevent long lasting disabilities.
coverSTORY Messages must be tailored to children’s needs and understanding… Children hold the key to change and to a future free from stigma and discrimination where early diagnosis and treatment become a reality for all. But telling children about the symptoms and impacts of TB, the stigma of leprosy and the implications of HIV is not easy. LEPRA has therefore designed innovative ways to communicate with children in a sensitive and effective manner and these techniques are being implemented in our programmes. LEPRA has trained local entertainers such as magicians and puppeteers to include health messages in their acts. Puppets now tell children stories about accepting people affected by leprosy, and TB treatment has replaced the traditional rabbit the magician pulls out of the hat. Street plays and dramas include nursery rhymes adapted into songs about preventing deaths from malaria. Children are captivated by the stories of non-discrimination, learn how to prevent disease and are fascinated to hear how a small mosquito can cause so much sorrow through malaria and LF.
Children are changing their communities from within... These forms of educational entertainment are effective at communicating messages about the reality of disease, the impact they may have and ways in which children can stay healthy. Many of the children identify with these situations and hearing health advice from a puppet or magician has a long lasting impression. Children feel encouraged to take responsibility for their health and that of others, encouraging their relatives to sleep under bed nets and to go to the nearest health post if they identify suspect leprosy patches. As a result of these health messages in schools, slums and rural communities many children have identified the symptoms of diseases in their relatives and encouraged them to come forward for treatment.
A captivated audience
For communities affected by disease information is power... The aim of health education and promotion is to inform and encourage people to take action on the diseases affecting them. The messages include common symptoms of diseases, where to get help and what the consequences might be if signs and symptoms are ignored. Giving people this knowledge means that they are more able to take action to protect themselves and their families from disease. Through health promotion and education campaigns people realise that they have the power to change their behaviour, their environment and a duty to share the lessons they have learned with others in their community.
A targeted approach reaps rewards… We aim to reach as many people as possible: those who are most affected by disease and poverty, those who are marginalised or difficult to reach as well as children. Reaching people with health messages isn’t always easy. Our programmes staff work hard to overcome geographic and social boundaries and to ensure that messages are targeted and relevant to the audience. By simply adding a little bit of magic to a child’s life we can ensure they stay healthy and have a brighter future.
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Another victory in the battle against stigma, Brazil
Paula and her mother
It was during the afternoon of June 3rd 2009 that a government Social worker in Juazeiro do Norte, Cearรก, Brazil came to our Social Ombudsman project to report a case of discrimination against a teenage girl called Paula and her brothers. The incident occurred in the one place where you would expect them to be safe: their school. 6 | healthinaction
countryFOCUS Advocating equal treatment for people affected by leprosy… In the municipality of Juazeiro do Norte, Ceará, Brazil, local partner MORHAN (the movement for the reintegration of people affected by leprosy) has been advocating for the equal and fair treatment of people affected by leprosy for over a decade. LEPRA has supported this group for a number of years in its struggle to fight the stigma and discrimination experienced by people with leprosy or ‘Hansen’s Disease’ as it is known in Brazil. During 2008, supported by LEPRA, the project was successful in setting up a Social Ombudsman to act as a channel to the relevant authorities for community concerns on discrimination. The result is an independent body to which people affected by leprosy can turn to report any violation of their rights, and share their grievances or experiences of discrimination. The Ombudsman is then responsible for directing any serious claims for resolution by the appropriate authorities.
School exclusion for leprosy patient is challenged… The children in the case in question were excluded from school after their mother disclosed to a teacher that one of them, her daughter Paula, was undergoing treatment for leprosy. After wrongly assuming that the children were highly infectious, Paula’s teacher ordered her and her brothers to leave their classroom and not to attend school again. The teacher felt it was necessary to exclude Paula and her brothers on the basis that they could infect other children and staff. The teacher then went on to contact the local health centre to enquire about vaccination against the disease for all of her students. Of course, no such vaccination exists and, after speaking with the teacher, the health worker involved contacted the social services department who alerted the Social Ombudsman project. The phone call was the beginning of an investigation into why these children had been so unfairly treated and wrongfully excluded from their classroom. As a result, the head of MORHAN Juazeiro, Faustino Pinto, accompanied our programme officer in Brazil on a visit to the school where
they met with the Head Teacher. Faustino is a former leprosy patient who was himself excluded from school at the age of 11. Having experienced difficulties with schooling he knows only too well that for children like Paula and her brothers living in poorer areas of cities like Juazeiro do Norte, access to education can be a foothold to a better life.
Community sensitisation to reduce stigma… Following this intervention by LEPRA and MORHAN the school agreed to allow Paula and her brothers back. They also agreed to the organisation of a number of activities to tell teachers, students and parents about leprosy and the realities of the disease. These activities are aimed at increasing understanding and reducing the stigma of the disease within the community. The mediation work between the school and the family, undertaken by members of the Social Ombudsman project, led to the teacher apologising to the family and the community, recognising her mistake and misinformation about the disease.
Family support was provided… The team also visited Paula and her family at their home in the community of Joao Cabral where overcrowding is common; eleven people live in her small house. They provided support to the family in the form of advice and counselling, support which would not have been available to them without the existence of the project.
A successful outcome… This story could have ended as one more forgotten case in which children suffered in silence as a result of discriminatory practices. Despite having had access to leprosy treatment, had the children been unable to return to school their futures would still have been blighted by a lack of opportunity that further education could have given them. Thanks to the success of the Social Ombudsman project, this spiral of discrimination and stigmatisation was broken.
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Changing the life of a child LEPRA front line staff regularly work with children affected by diseases such as leprosy, TB and HIV/AIDS. We have selected the following stories to illustrate the impact that your support can have on their lives and their futures.
Shareefa, age 3 Three year old Shareefa was pale and had severe skin rashes, she couldn’t walk on her own and found it very difficult to eat. Even before she was diagnosed as HIV positive she faced discrimination from relatives who wouldn’t allow their children to play with her because of her appearance. Both her father and mother are HIV positive. Shareefa’s mother brought her skin rashes to the attention of an outreach worker from the CHAHA project on which we collaborate with a number of partner NGOs. CHAHA, meaning ‘a wish’ in Hindi, is a care and support project that aims to help children cope with the trauma of being infected or affected by HIV/AIDS. Now on anti-retroviral therapy (ART) Shareefa has gained weight and is able to walk on her own. Her mother says,
Shanti and her mother
Shanti, age 9 Nine year old Shanti lives in a slum in Jeypore, Orissa state, India. Until recently she regularly missed school as a result of undiagnosed tuberculosis (TB). After a month of trying to treat her symptoms with sandalwood paste applied to the enlarged lymph nodes under her arms and on her neck, she was brought by her mother to LEPRA’s Koralep project. Here she was diagnosed with extra-pulmonary TB and began treatment.
“Today if we are alive and confident enough it is because of LEPRA and HLCHS*. We all together address the issues of HIV/AIDS.” *Hyderabad Leprosy Control and Health Society is one of LEPRA’s NGO partners
Speaking in the local language her mother, a daily wage earner in a factory, tells us,
“LEPRA saved the life of my child.” “We are a very poor family, so we have no ideas about many things. We cannot afford TB treatment. LEPRA supports us for all types of illnesses without cost.” To LEPRA’s supporters in the UK she says, “Special thanks for your help, it is difficult to spell out all your kindness. Because of you my daughter was cured.” Shareefa
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Why leave a legacy to LEPRA? A legacy or bequest to LEPRA in your Will is one way of helping us to continue the work you supported during your lifetime; ensuring healthcare is available long-term to those who need it most, something that we in the UK often take for granted.
Hari and his mother
Hari, age 8 Eight year old Hari’s family and community were unaware that he had leprosy and thought that the elevated patches on his face were attributable to heat rash. A LEPRA field worker first noticed the signs and symptoms in the boy during one of her field visits in April 2009. According to her, had his community known that these were leprosy patches then he would have “suffered with stigma and discrimination and would have been isolated by the community. His future would be neglected.” Before Hari could begin Multi Drug Therapy it was found that he was experiencing a leprosy reaction. This was the result of his body’s own immune system reacting against dead leprosy bacteria. Leprosy reactions can be very painful and increase the risk of deformity and blindness. By treating the reaction quickly, staff at LEPRA’s referral centre helped to prevent permanent nerve damage and disability. According to Hari’s father,
“We feel LEPRA staff are our family members.”
During the course of our work we are called upon not only to treat patients, but also to work with governments and community organisations on new programmes, as well as to strengthen and improve networks and infrastructure for health that are already in place. Legacy income gives us the flexibility we need to achieve our long-term goals. It is very easy to include a legacy to LEPRA Health in Action in your Will*. Alternatively if you have already drawn up a Will, you may add a simple bequest by way of a Codicil. *You should discuss the full implications of making a Will with your legal advisor.
Be a part of
BIG in 2010
Virgin London Marathon 25th April 2010
In 2009 16 runners raised £26,500 for LEPRA Think what a difference you could make
Hari, who is in year two, says he will ‘study until year 10 and then work as a mechanic in a garage and get married.’
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No Man is an Island
Dominic at the start of his ride
END TO END – Lands’ End to John O’Groats by Dominic Baker In late March I started off alone from Lands’ End in an attempt to ride to John O’Groats to raise funds for LEPRA. After getting a passer-by to take the obligatory Lands’ End sign photo I decided this was going to be pretty straightforward. Seven miles down the road and £300 lighter, following a broken left shifter and a puncture on a dual carriageway, I came closer than supposed ‘rufty-tufty’ outdoors people like me should to tears. Highlights of the trip up to Scotland included very scenic riding through the West Country, and kamikaze style rides over Bodmin and the Quantocks. At times the weather was good but there were bad days. Caught in furious headwinds and intermittent hail, as was the case in the Wirral and the Dales, one consolation was the wonderfully wild scenery of Great Britain!
On 31st May, Andreas Palikiras ran the Edinburgh Marathon to raise money for LEPRA. Spinalonga, ‘The Island’ featured in Victoria Hislop’s novel of the same name, has become the latest destination offered to honeymoon couples by Andreas’ ethical online company ‘Ionian Weddings’. Touched by the tainted history of this beautiful island due to its former use as a leprosy colony, he chose to use his marathon place to raise money to help other communities affected by the same disease.
“Running for LEPRA made running my third marathon much more meaningful” Andreas continues to promote LEPRA through his work. Our thanks, not only to him but to all our Edinburgh runners this year who have raised £1,250 so far.
After Scotland my luck changed, the wind blew the right way and I gained a support car in the form of my Mum. With knees that were virtually creaking I benefited from the 25mph tail wind to push me up the east coast, and with the second obligatory signpost photo on the memory card it was all over. In the end around £2,000 was raised (excluding Gift Aid). It is hugely satisfying to know that this money is going to help those most in need and it is this thought that really helped me overcome any small discomforts experienced. For more see: www.leprahealthinaction.org
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Andreas in action
WORLD LEPROSY WEEK 25 -31 January 2010
Let's Let's Let's Let's Let's Let's
a a a a a a
meal of it big deal of it party of it tea party of it play of it game of it
LETâ€™S MAKE SOMETHING OF IT!
Please cut out and display, help us spread the message
make make make make make make
healthinaction Reg Charity no. 213251 Charity registered in Scotland no. SC039715
28 Middleborough Colchester CO1 1TG 01206 216700 www.leprahealthinaction.org
Whatever you are planning to do during World Leprosy Week, will you make something of it for LEPRA Health in Action? Every fundraising activity, no matter how small can help us to raise funds and tell more people about leprosy and LEPRA. Please visit our website for posters to advertise your event.
WORLD AIDS DAY December 1st
Reg Charity no. 213251 Charity registered in Scotland no. SC039715
visit www.leprahealthinaction.org to find out more about our work with HIV/AIDS
Please cut out and display, help us spread the message
LETâ€™S MAKE A DAY OF IT!
Communities in Action to combat TB In India, one person dies as a result of TB every 90 seconds. Each year 1.9 million people develop TB in India but these deaths can be avoided with early diagnosis, treatment and care of the disease. The poorest are always the worst affected. Living in deprived conditions without sanitation, running water or electricity, tribal people such as those in the Adilabad district of Andhra Pradesh are at risk of contracting TB as well as other debilitating diseases. Reaching the unreached… LEPRA Health in Action is at work in communities where people are unable to access government health facilities. They are affected by these diseases not only physically but also financially as their ability to earn an income can be reduced. Half of the population in the whole district lives below the poverty line, surviving on under 1US$ a day. Although the conditions are difficult and the area is physically hard to reach, the LEPRA team has accepted the challenge of bringing health to those who need it most. LEPRA’s TB control project in the tribal area of Adilabad brings testing, treatment and health education to tribal communities.
Mobilising communities… As part of the project, communities are encouraged to identify their most pressing health needs and to demand that these are addressed by the local authorities. It is essential for the local government to understand the needs of the poorest and to provide adequate health services for them. One community organised a powerful campaign to grab the attention of local government officials
and demand their rights. Motivated by the need to express their concerns, people sent postcards with the simple but powerful phrase: “I am stopping TB, are you?” Local health authorities received over 300 postcards which encouraged them to participate in activities organised for World TB Day in March.
Finding a voice… As well as providing awareness, diagnosis and cure, LEPRA’s projects aim to give people a voice. People deserve the power to choose, to improve their health and to demand their right to participate in decision making. Tuberculosis can be cured and at LEPRA we believe that with your help we can win the battle against TB in the areas where we work. We have selected this story to share with you as it illustrates that our work on helping these most marginalised of people to appreciate their rights in terms of health has succeeded in doing just that. Please continue to send us your used postcards and stamps. Sold at specialist fairs they raise a lot of money for LEPRA each year.
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communityNEWS Sam cycles 1,000 miles across Europe for LEPRA
Recovering at St Andrews
Edinburgh to St Andrews cycle ride – record numbers achieved On Saturday the 20th of June, 1060 cyclists left Edinburgh to ride the 68 miles to St Andrews for LEPRA. LEPRA would like to thank Edinburgh and Fife District Councils for their warm support, Edinburgh and the Lothians and Fife Police for their help, and the Ladies Circle and Round Table in Kinross for wonderful lunches cheerfully served. A big thank you too for the good people of Freuchie Parish Church for their enthusiastic support and superb afternoon teas, the young men from the Edinburgh Bike Co–op who repair bikes and sooth frustration so very well, and The St Andrews Ambulance Association for their reassuring presence and encouragement. Working as a magnificent team for LEPRA on this great day all of you have become part of the spirit of a truly wonderful and unique event which raises much needed funds for LEPRA. It is hoped that we will exceed £50,000 in monies raised through the event this year. The 30th Edinburgh to St Andrews Cycle Ride will take place on Saturday 19th June 2010. For more information please contact RosK@leprahealthinaction.org
Channel Isles get fit with LEPRA LEPRA was warmly received in the Channel Islands during April and May where 9 schools took part in Fun Fitness Workouts in both Jersey and Guernsey. Our thanks go to the staff and pupils for their enthusiasm and interest in LEPRA’s work. All schools received plaques for their tremendous efforts and there are future plans in the diary for continued support to LEPRA.
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Fifteen year-old Sam first heard about LEPRA through a talk held at his school and wanted to do something to help. Together with mum Yvonne, and step dad Paul, Sam set off from Boulogne in France and cycled the 1,000 miles North Sea Route passing through France, Belgium and Germany before finishing in Esbjerg, Denmark. Our heartfelt thanks go to Sam who managed to raise over £3,000 for LEPRA. Our thanks also go to The William Lovell School in Sickney near Boston, kind supporters of LEPRA for over 20 years.
The Burlein family
Sur votre vélo pour LEPRA The Burlein family combined a love of France with a desire to help people affected by diseases of poverty by taking part in the 60 mile ‘Three Valleys’ cycle ride in Dieppe, France. According to mum Maddy, “as we love France and we quite like cycling we thought this would be a great way to raise money.” Although there was a lot of up hill cycling, “the boys coped really well and were proud to wear their T-shirts and of what they achieved for LEPRA. Our friends and family have been pretty generous and we were able to raise £200.”
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we would like your help was unable to cultivate his machamba (vegetable plot) and had a persistent cough which never seemed to improve. Antonio was very sad to see his favourite Vôvô (grandpa) looking so ill, and was extremely worried. What was this unnamed illness which Vôvô Miguel was suffering from? The answer came in the month of May. Magdalena, local community health volunteer trained by LEPRA and president of the village Health Council, visited Miguel’s house on one of her door-to-door health checks and, after discussion with Miguel, informed him that his symptoms could be caused by tuberculosis.
Thank you for saving my Vôvô This is Antonio. He is 4 years old and lives in a village called Nathomodone in Mozambique. Antonio lives with his mother and baby brother in a small mud house nearby to his much loved grandfather Miguel. In January, around about the time of Antonio’s 4th birthday, his grandfather began to lose weight and look frail. He had no appetite or strength to play with Antonio as he was accustomed to doing,
After explaining the causes of TB, transmission and treatment to Miguel and his family, LEPRA staff took the increasingly weak Miguel to the health centre for diagnosis. Miguel was diagnosed as having TB and began treatment on 23rd May under Magdalena’s supervision and with the support of his family. Antonio, and Miguel’s other grandchildren who spend a lot of time with him were also advised to go for TB testing, and although Antonio was afraid, his grandfather assured him that there was nothing to fear. Miguel is now doing well and feeling stronger after almost a month of treatment, but Magdalena is quick to remind him that he must continue taking the medication until tests confirm that he is cured. With your help we can continue to work towards achieving equal access to healthcare for people like Antonio and his Vôvô Miguel.
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.