LEPRA News September 2011 by Nicolette Dawson

LEPRAnews

Indiaâ&#x20AC;&#x2122;s inspirations past and present In this issue: Colonies finding their voice Leprosy warriors

September 2011 www.leprahealthinaction.org

messagefromtheCE

LEPRAnews

Welcome to September’s edition of LEPRA News. This issue focuses on people with leprosy and the major challenges and barriers they face. You will read about Raghunath, who transformed his experience of leprosy from discrimination to social reintegration, and Gouranga who has developed leprosy complications and needs our help. You will see that we like being first for leprosy, whether it be for international recognition, or for starting a particular project. As we strive for better health and living conditions in leprosy colonies, and ensure that our projects can be extended to others in need, I hope that this newsletter makes for an interesting read. Please spread the word about LEPRA Health in Action by circulating LEPRA News amongst your friends and family. We thank you for your dedication to our work. Joanna Belfield Editor, LEPRA News

Design and Print The Print Connection, 01473 810230

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Looking forward to a brighter future -

Message from the CE

Cover Story

Life after leprosy - Raghunath’s story

Inside the colony

How colonies are finding their voice

Meet the team

Adam Storring catches up with India staff

Programme News

Health programme helped women and children

Fundraising News

How you can help

Help us make it right for Gouranga Sahu

Dates for your Diary 2011-12

Editor Joanna Belfield

Photography LEPRA Health in Action Colin Summers Photography

for people with leprosy before being declared as the first International Leprosy Prevention Organisation in 1931.

In this issue

Welcome

Contributors Sarah Nancollas – Chief Executive Nicolette Dawson – Communications Joanna Belfield – Editor LEPRA News Irene Allen – Asst Editor Leprosy Review Adam Storring – Volunteer (India) Madhavi Sakuru – Programmes Officer Catherine Cherry – Programmes Officer Karen Page – Events Fundraiser Lizzie Dearling – Events Fundraiser Ros Kerry – Community Fundraising Community Fundraising Team Bernard Farmer – Deputy CE

September 2011

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

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

Chester Marathon 2011 9th October

Paris Marathon 2012 8th April

Dublin Marathon 2011 31st October

London Marathon 2012 22nd April

New! India Bike Ride 2011 12th November

Edinburgh Marathon 2012 May (date tbc)

Great Swims (1 mile) Various dates and locations

BUPA London 10k 2012 May (date tbc)

Supporters’ Trip 2012 20th January

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

India Bike Ride 2012 21st January

Balakrishna with Padmavathy

LEPRA has an illustrious past - the best is yet to come At a recent induction programme for new staff, I was inspired by a presentation on the history of LEPRA Health in Action. It really brought home to me the way that LEPRA has been at the forefront of developments in leprosy care and treatment for nearly 90 years. It made me realise that we can never become complacent but must continue to look for the next breakthrough whilst continuing to use our skills to transform lives. The socio-economic impact of leprosy and other diseases that cause discrimination should

Obituary: Denis Nolan (1950-2011) Denis Nolan, a supporter of LEPRA Health in Action, died in May aged 61. He supported

never be underestimated, and work in this area forms a significant part of our activities alongside the more direct aspects of the disease. For example, a LEPRA volunteer working with the residents’ committee of a leprosy colony will spend most of their time helping people to gain disability grants and government pensions, enabling them to have a voice at the district government level, and showing them how to use existing legislation to claim their rights. In some ways this is almost coming full circle as the initial work of LEPRA was about care

LEPRA for more than 20 years and this generosity extended to organising annual street collections around his home in North Essex. Denis was very well known and respected locally for his charitable work.

Alongside our work to empower people living with discrimination, we are also working at national and international levels to influence the way that resources are allocated to fight leprosy and its effects. Our team in India has developed a simple but effective categorisation tool that allows interventions to be focused and cost effective, taking into account training requirements, disease burden, and disability levels. Over the next year we hope to see this adopted by governments and international agencies. This would be another significant step in ensuring that resources are efficiently targeted where they are needed most. None of this would be possible without your loyal and continuing support. The money that you give can act as seed funding and allows us to lever additional funding from elsewhere. It also allows us to respond to real needs before they are identified by others. In this way we can remain true to our history and continue at the leading edge of developments in leprosy. Without you none of this would be possible – a big thank you from all of us.

We appreciate the support that Denis gave to LEPRA in helping to transform the lives of marginalised people. Without people like him, we would not be able to do all that we do.

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messagefromtheCE

LEPRAnews

Design and Print The Print Connection, 01473 810230

2 | healthinaction

Looking forward to a brighter future -

Message from the CE

Cover Story

Life after leprosy - Raghunath’s story

Inside the colony

How colonies are finding their voice

Meet the team

Adam Storring catches up with India staff

Programme News

Health programme helped women and children

Fundraising News

How you can help

Help us make it right for Gouranga Sahu

Dates for your Diary 2011-12

Editor Joanna Belfield

Photography LEPRA Health in Action Colin Summers Photography

for people with leprosy before being declared as the first International Leprosy Prevention Organisation in 1931.

In this issue

Welcome

September 2011

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

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

Chester Marathon 2011 9th October

Paris Marathon 2012 8th April

Dublin Marathon 2011 31st October

London Marathon 2012 22nd April

New! India Bike Ride 2011 12th November

Edinburgh Marathon 2012 May (date tbc)

Great Swims (1 mile) Various dates and locations

BUPA London 10k 2012 May (date tbc)

Supporters’ Trip 2012 20th January

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

India Bike Ride 2012 21st January

Balakrishna with Padmavathy

Obituary: Denis Nolan (1950-2011) Denis Nolan, a supporter of LEPRA Health in Action, died in May aged 61. He supported

We appreciate the support that Denis gave to LEPRA in helping to transform the lives of marginalised people. Without people like him, we would not be able to do all that we do.

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COVERstory

COVERstory explained how almost 20 years ago he had begun to notice pigmented patches developing on his skin. Raghunath didn’t realise it, but he had contracted multibacillary leprosy.

What is multibacillary leprosy? People with multibacillary leprosy have more bacilli in their bodies than those with paucibacillary leprosy. This means that their immune systems become swamped by the invading bacilli. Once we know which type of leprosy someone has, we can prescribe the correct treatment. Raghunath outside his home with a bicycle donated by a UK supporter

Raghunath Mohanty: an inspiration and model for community involvement “Before LEPRA my life was spoiled, my family would not accept me. My life was gone,” Raghunath Mohanty told us in his husky voice, as we sat beneath the trees in the village of Ekamba in Koraput, Orissa. Impairments caused by leprosy once left Raghunath as an outcast. Now TB posters and awards for community service adorn the walls of his home. “Now people come to me, I have a place as a TB volunteer. They see that I am affected by leprosy,

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but they also see me doing good things. They realise I am normal, like them. Now with LEPRA we work together to treat and prevent TB and HIV in the area.” The baby pictured on the front cover, accompanied her mother at a TB awareness meeting in their village. Raghunath gives similar talks in his community, advising people where to come for help. Raghunath showed us his strong hands. Leprosy had clearly left its mark on one of them. He

At the time he was working in electronics, a job that he loved but that required him to use his hands with dexterity. As time passed, damage to sensory nerve fibres meant that Raghunath lost the sensation in his hands and feet - the tips of his fingers curled inwards as motor fibres became damaged. Unable to hold the tools of his trade, he lost his job and became homeless. Raghunath left his home town of Puri and drifted 330 miles south-west, eventually finding work as a security guard at a quarry in Koraput. One day he burnt his leg on a fire, the wound did not heal but developed into an ulcer. At the primary health centre he visited, a LEPRA medical worker confirmed that he had multibacillary leprosy. Raghunath began multi-drug treatment to kill the leprosy bacilli and was admitted to the in-patient ward at LEPRA Koraput Community Care Centre (CCC) for ulcer care.

LEPRA SAHYOG (Co-operation) Project In 2008, with funding from the European Union, LEPRA launched a project in Orissa State to support the Indian government’s Tribal Action Plan, which aims to ensure that the national TB programme reaches tribal communities. The project focuses on three districts – Koraput, Rayagada and Malkangiri – home to some 1.3 million people from scheduled tribes. As a community based project, SAHYOG aims to strengthen the health structures within communities to ensure that good mechanisms are in place to diagnose, treat, refer and followup on TB cases, and to encourage people to seek help on health issues. Central to the SAHYOG project is the need to improve communication and co-operation between all the individuals and organisations that make up the health system.

When he was better he tried to settle in Ekamba. “When I came to this village no one would come near me because of my appearance. I was very lonely.” Raghunath explained how his time with LEPRA at the CCC had strengthened his resolve to fight against discrimination and for dignity and acceptance. Last year he was selected as a TB volunteer connecting people living in remote communities to diagnosis and treatment for TB and HIV as part of the LEPRA SAHYOG project. Raghunath cycles 30-40 km per day connecting the people in his area and the sputum collection centre to TB diagnostic facilities and treatment. He transports TB medicines to patients, ensuring they complete the treatment and do not develop drug-resistant TB. He records every tablet taken. Because he has no feeling in his hands and feet, he relies on other senses. He explained: “When I see my hands on the brakes and my feet on the pedals I know I am cycling.”

“My life has come a full circle. Thanks to LEPRA I now feel that my life is as good as it was before.”

In 2010, Raghunath referred 43 suspected TB cases, six of these were found to be positive (including the little girl pictured). They are undergoing treatment under his supervision. He also referred 24 suspected HIV cases, of which three were positive, and one leprosy case.

View a short film on Raghunath at www.youtube.com/LEPRAHinA

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COVERstory

COVERstory explained how almost 20 years ago he had begun to notice pigmented patches developing on his skin. Raghunath didn’t realise it, but he had contracted multibacillary leprosy.

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“My life has come a full circle. Thanks to LEPRA I now feel that my life is as good as it was before.”

View a short film on Raghunath at www.youtube.com/LEPRAHinA

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insideTHECOLONY

insideTHECOLONY “What struck me when visiting two of our projects was the contrast of people’s physical leprosy symptoms. At a leprosy hospital, 20 young adults were receiving reconstructive surgery for fingers that were beginning to claw. They enjoyed a game of volley ball and were thankful that we could reverse their condition in time. Young lives restored. Young lives with a future ahead of them.

Colonies finding their voice by Joanna Belfield, Editor.

“At Shantinagar, the older residents of the colony were at the most advanced stage of leprosy, with their fingers and toes considerably reduced or missing. They were about to receive customised shoes from LEPRA. Their condition revealed the greatest contrast and seemed to need the most intervention, but what they and other colonies need the most is so simple, and costs so little.”

LEPRA is helping members of Grace Colony to stand up for their right to medical supplies

Shantinagar is one of 84 leprosy colonies across the state of Andhra Pradesh. It is eight years old and is supported by LEPRA’s UMEED project. Residents are provided with customised shoes, treatment and dressings, and community health workers demonstrate how washing, oiling and protecting feet can prevent further injury. When I arrived at the colony, outside Hyderabad, I came across 50-year-old Lingamma, who was standing by her home, a young child close by her side. Lingamma and her husband, Krishna, share a home with their three sons. Both Lingamma and Krishna have advanced leprosy because they contracted the disease before multi-drug treatment was available in 1984, and before The Lepers in India Act was abolished. At this time, people were forced, against their will, to leave their families and be isolated in these colonies. For Krishna and Lingamma, the story is a different one. It was their then spouses that had left them and they chose to live at the colony for acceptance and

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belonging. The colony is their home and is so by choice. Yet Shantinagar is different to other colonies.

project is supporting SLAP’s fight for an improved government pension and access to food. It is hoped that these measures will remove the need for begging.

Shantinagar is a colony that works. It is a place of support which has turned full circle from being a colony forced on people. There is a huge sense of community and, collectively, through the Society for Leprosy Affected People (SLAP), residents have a voice. Other colonies across Andhra Pradesh are being supported by SLAP and its President Mr Narsappa, who lives at the colony. Mr Narsappa is helping bring other colonies up to a similar standard, and this is what he has to say: “Customised shoes are very much required. They are a basic need and are very important. Without footwear, people wouldn’t be able to walk and damage to feet and the development of ulcers could occur. Fifty per cent of the colonies are still not getting services like footwear, and medical needs are not being addressed.”

In Andhra Pradesh, a total population of 20,000 people affected by leprosy live within colonies. More needs to be done to ensure that others benefit from the levels of support, conditions and health services seen at Shantinagar, and are supported in developing their voice.

LEPRA works with a number of colonies including Shantinagar and Grace Colony (pictured above). More than 145 families live at Shantinagar, some surviving on a small pension which is supplemented with weaving. Yet for some residents at these and other colonies, begging is the only means of livelihood. LEPRA’s

Lingamma and Krishna could not return to their villages due to leprosy discrimination and stigma

Celebrating 80 years of being the first There is something wonderful about being ‘first’ in anything, whether it is a race, a competition or that first footprint in the snow. That is why we at LEPRA are so proud of having been named the first Leprosy Prevention Organisation back in 1931. Up until then, although religious bodies had been involved in the care of those who had leprosy, no organisation had tackled the cause of the disease head on. LEPRA has always been in the forefront of the fight against leprosy, and it was a reward and an honour to be recognised as the first organisation to do so. Back in 1931 there was no cure for leprosy and no-one knew how it was transmitted. This wonderful accolade recognised our pioneering work in the field and our determination to eradicate leprosy. It has been a long struggle against prejudice, stigma, and all erroneous beliefs that have surrounded this most ancient and misunderstood of diseases. Over the years we have educated local health workers (and witch doctors in parts of Africa) and informed those affected, and their wider communities, that leprosy is neither a curse from God nor the result of a sinful life, but just another curable disease. Laurels we may have received, but we are certainly not resting on them. The leprosy bacillus is very adaptable, and has in the past managed to thwart all attempts to eradicate it. Even today we are still finding new pools of the disease in unexpected places. But with your help we will continue to reduce the impact of the leprosy burden.

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insideTHECOLONY

Colonies finding their voice by Joanna Belfield, Editor.

LEPRA is helping members of Grace Colony to stand up for their right to medical supplies

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belonging. The colony is their home and is so by choice. Yet Shantinagar is different to other colonies.

project is supporting SLAP’s fight for an improved government pension and access to food. It is hoped that these measures will remove the need for begging.

Lingamma and Krishna could not return to their villages due to leprosy discrimination and stigma

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meetTHETEAM

Leprosy Warriors

Finance Manager for Andhra Pradesh Regional Office. Pullaiah set up an Orissa bank account, while Jayaraman procured buildings and vehicles. However, it was hard to find trained field staff, so Ranganadha asked for Sathiraju, then a non-medical worker with HYLEP, to be transferred to Sonepur. “Actually, I didn’t want to go at first,” said Sathiraju: “They gave me the incentive of promotion as a supervisor.” He had trained as a leprosy worker after graduating from university, working first for the German Leprosy Relief Association and then HYLEP. Putting new leprosy cases on the map – Sathiraju (left) and Dr Rao (right) ten years after the start of the project

Nowadays, Dr Ranganadha Rao and Sathiraju are part of LEPRA India’s senior management, as Chief Executive and Project Coordinator respectively. In 1990 and 1991 they led LEPRA’s first field project in the state of Orissa. Adam Storring caught up with them to hear about their experiences. Sathiraju has vast experience of fighting leprosy, so I was delighted to be able to grab a few minutes of his time in LEPRA India’s head office in Hyderabad to ask about his experiences with BOLEP - one of LEPRA’s earliest direct intervention projects in India. LEPRA had founded a separate Indian branch in 1989, based in Hyderabad in Andhra Pradesh and initially intended to support the Indian government’s National Leprosy Elimination Programme. However, when it found that there were no government leprosy workers in Hyderabad, it recruited its own and started the HYLEP project, which still today - under the name of UMEED provides care for many people in slum areas of Hyderabad.

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In Orissa, LEPRA took responsibility for Bolangir and Koraput districts, in the undeveloped western part of the state. They were the ones no-one else wanted, without proper roads or government infrastructure. Arriving in Sonepur division of Bolangir in April 1990 as Medical Officer for the newly-formed BOLEP, Ranganadha found no doctors there at all and very high ignorance in the area, with people maintaining that there was no leprosy in Sonepur. Ranganadha had been a regimental doctor with the Indian army, but left to join LEPRA. He arrived in Orissa with two more LEPRA stalwarts, Jayaraman, still with the organisation as Administration Manager, and Pullaiah, now

meetTHETEAM

Travelling around Sonepur to diagnose children and their families for leprosy

“First we did surveillance and awareness work.” said Ranganadha: “We’d go to villages and talk to them about leprosy.” The villagers were only available between 11am and 2pm, when they took rest from the fields in the heat of the day. Ranganadha, Sathiraju and a colleague would visit schools in the mornings, screening children for leprosy, visit two or three villages in the middle of the day, and then complete documentation in the afternoons. They found the prevalence of leprosy to be 50 to 100 times higher than expected. In January 1991, they began administering multi-drug therapy. “We’d start at 3am because of the distance we had to cover,” Ranganadha told me. “We’d get to the first drug-distribution point at 6am, the second at 7.30am, the third at 8.15am. We tried to cover at least ten distribution points in a day.” The non-medical workers would encourage people to come forward for treatment, and bring them to the distribution points. Sathiraju would go ahead in the first vehicle, documenting new cases, and Ranganadha would follow behind in the second to give treatment. “You had to be on time,” said Ranganadha. “Because if you were delayed they’d be waiting without food. There had to

be a three-hour gap between eating and taking the drugs.” In the first half of 1991, with 50 to 60 patients at each distribution point, they saw an average of 500-700 cases a day. From July the number began dropping to 200-300 and they were actually able to start taking lunch, at around 3pm. Before then they hadn’t had time for lunch or breakfast. When they returned, Pullaiah’s work would start. He would work from 7pm until 10pm, looking at the schedule for the following day and creating medicine packs for each stop. Two or three times a week, they had to cross the huge Mahanadi river, which cuts Orissa (and Bolangir) in two. There was no bridge, only country boats propelled by bamboo poles, on which they travelled even during the flood. “At that time there was no thought” Sathiraju told me. “If you ask me to go and see the patient, I’m off.” Six months a year they kept a vehicle permanently on the other side of the river. Boats travelled across it only until sunset, and if the project workers arrived too late they slept on the river bank and crossed in the morning. In late 1991, with the number of leprosy cases greatly reduced, Ranganadha left Bolangir to prepare LEPRA’s work in Koraput district. Sathiraju went on to work in a succession of LEPRA projects in remote districts of Orissa and Andhra Pradesh. Twenty years after its foundation, LEPRA continues to provide expert leprosy services for the people of Bolangir and Sonepur. Looking back on our history – Sathiraju and Ranganadha treating a patient in 1990

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meetTHETEAM

Leprosy Warriors

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meetTHETEAM

Travelling around Sonepur to diagnose children and their families for leprosy

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programmeNEWS

programmeNEWS This five-year project, which ended in December 2010, set out to cover all of the 26 administrative ‘blocks’ of the district, with the goal of improving the health and quality of life of rural communities living in remote, inaccessible areas. Central to the aims of MICHP was that tribal communities in particular should be able to carry out preventive and curative actions for improving their health, and be able to effectively communicate and advocate for their rights to access quality health services. MICHP adopted a three-pronged approach detailed of: i) encouraging community participation, including the formation and strengthening of Village Health Committees; ii) enhancing community participation in the development of Information, Education and Communication resources (IEC), and iii) setting up village health resource centres for distributing health information widely.

Project impact Women like Janaki (pictured with daughter Sonali) are offered socio-economic support so that they can make a living from rice farming

Implementing community health projects Integrated Community Health Projects are holistic health development programmes that not only provide effective treatment for many infectious diseases, but also invest in improving the government’s provision of health services and encouraging communities to demand such services. Mayurbhanj is among the largest districts in Orissa with a population of 2.2 million. Of this

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population, 57 per cent of people are scheduled tribes. LEPRA began working in Mayurbhanj in 2000, focusing on leprosy. In 2005, following a detailed health needs assessment, LEPRA launched the Mayurbhanj Integrated Community Health Project (MICHP), focusing on TB and malaria whilst maintaining support for leprosy activities. LEPRA has learnt over time that the social stigma of leprosy is reduced amongst patients and in the communities that use a community health approach. Integration of leprosy into general health services has other benefits for patients such as shorter distances to travel for treatment, earlier diagnosis and therefore reduced disabilities.

The project targeted a number of high risk groups including children under five and pregnant women, tribal communities in remote inaccessible areas, and health care providers. Nearly two million people, over half women, have benefited from this project since 2006. This includes one and a half million tribal people. Around 420,000 of them were children or pregnant women.

A key focus of the project’s efforts was to improve the access of tribal and other rural communities to quality diagnostic and treatment services for TB and malaria. It provided extensive training which led to an improvement in the attitude and behaviour of the staff and, as a result, the quality of services has substantially improved over the past five years. Where there were just 340 providers of TB treatment at the time of the project’s launch, by 2010 there were nearly 6,000 providers. It also encouraged communities to refer suspected cases of TB and malaria to government health centres. Nearly 20,000 cases were referred during 2010 alone. The success of this project demonstrates that holistic community health projects go a long way in building the resilience of communities, strengthening local health systems and leading to a lasting change to the health-seeking behaviour of people. LEPRA will extend the fight against diseases of poverty if we are able to fund more projects that cover entire districts and states in India.

With the aim of improving access to health information for rural communities, the project set up health resource centres. Some of the centres’ key benefits, as perceived by the local communities, were: counteracting misleading information from traditional healers; encouraging people to visit the government health facilities; and campaigning for better health services in their area. A range of health information materials were produced under the project. By 2010, nearly 30,000 people had made use of these materials and said that that they were ‘instrumental’ in obtaining better services for the community and in increasing the transparency and responsibility of public services.

Health centres were set up to benefit those at a greater risk of malaria and TB infection

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programmeNEWS

Project impact Women like Janaki (pictured with daughter Sonali) are offered socio-economic support so that they can make a living from rice farming

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Health centres were set up to benefit those at a greater risk of malaria and TB infection

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programmeNEWS

Halting the spread of a disabling disease LEPRA worked towards the elimination of Lymphatic Filariasis (LF) in Bangladesh from 2004 to 2011. Its work covered nine districts in northern Bangladesh, supporting LF services for a population of almost 20 million people. LF is a parasitic infection transmitted by mosquitoes. It is incurable and, if left untreated, it can cause painful swelling and enlargement of body parts, causing irreversible disfiguration and permanent disability. People with LF often experience social stigmatisation, and the associated disabilities can prevent them from being able to work, leaving them living in isolation and poverty. There is a serious shortage of health services available for people with the disease in Bangladesh, where LEPRA was then the only organisation supporting LF work. The role of LEPRA was to support the national government to organise and carry out mass drug administration (MDA) campaigns in an effort to stop the spread and eventually eliminate the disease. These campaigns can be very effective. By taking one tablet each year for five years is enough to interrupt transmission of the disease. This is supported and promoted by extensive awareness raising and education activities in communities in LF endemic districts. These activities spread information about LF, including the basic facts about the disease, how it is spread and how it is prevented. It also highlights the importance of getting involved in MDA campaigns and the availability of health services for people with the disease. LEPRA used a

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fundraisingNEWS LEPRA gears up for a new bike ride in India

combination of theatre, dance and entertainment to reach as many people as possible. We operated a fleet of education and communication vans which travelled from village to village screening film documentaries about LF. Loud speaker campaigns from travelling rickshaws carried the messages to village meeting places and markets, while leaflets and posters were distributed in villages door to door. Through these methods of communication, we have delivered health messages to over one million people and ensured that 85 per cent of people in the nine districts received preventative treatment during MDA campaigns. With their increased knowledge, communities are empowered to take control of LF prevention and make informed use of health services and MDA campaigns in their locality. However, LF remains highly endemic in 34 districts in Bangladesh. Around 70 million people are at risk of infection and around 1.4 million people are already infected. LEPRA urgently needs funds to increase its coverage of support to MDA programmes and deliver the messages around LF to many more people. With your support, we could implement services to help those affected by LF to manage their disabilities and teach them how hygiene, skin care and appropriate exercises can help to reduce swelling and increase mobility. Socio-economic rehabilitation programmes could help people with LF to overcome their disabilities and earn a living, thus reducing the discrimination and stigma they experience from their communities. Your help could enable us to expand our work in Bangladesh to help even more people.

Residents of Sirajgonj enjoyed street theatre performances on issues surrounding LF and leprosy

We are delighted to offer the choice of two bike rides in India; our new ride in Madhya Pradesh this November, and around parts of Orissa and Andhra Pradesh in January 2012.

Getting to know you - Jane Langdon meets a group of local school children at one of LEPRA’s projects

Visit LEPRA India Supporters Trip takes place from 21st January Ever fancied a trip to India with a difference or wanted to see LEPRA’s work first hand? LEPRA offers individuals and corporate employees a unique opportunity to visit projects and meet the people that we are helping. On the tour you will meet people who depend on LEPRA for assistance, and see the impact that the money you’ve helped raise has made on their lives. You will be immersed in culture and meet local people. This is a fantastic chance for you to take a challenging, emotional and spiritual journey.

LEPRA’s trips are not aimed at professional cyclists, more for individuals who are ready for a challenge and enjoy the great outdoors. Cycling is broken down into manageable distances and participants will be made welcome at LEPRA projects, schools and health centres along the way.

Meet Mamatha, a member of the LEPRA India support team

“There can be no better introduction to India than the welcome we had from LEPRA India staff when we went to see the work being done at LEPRA’s KORALEP project in Orissa.” - Penny Murch

Our colleagues in India are very keen and proud to showcase our life-changing work. Places are available for your trip of a lifetime. For more information call the events team on 01206 216799 or email events@leprahealthinaction.org

The trip coincides with World Leprosy Day, so supporters will be part of helping to increase awareness of leprosy and the stigma experienced by those who have been affected by it.

Every step makes a difference

The cost of the trip is £995 (plus taxes) which includes flights, food and accommodation. This is not a fundraising trip yet donations are greatly appreciated. For more information on this trip, please contact the events team on 01206 216799 or email events@leprahealthinaction.org. We will be pleased to help.

We have limited places available for the Virgin London Marathon 2012. The Marathon is one of LEPRA’s biggest fundraising events, with 2011 sponsorship reaching over £32,000. We are very thankful and proud of all the people who take part in this and any other fundraising event. If you are a keen runner or know anyone that would like to take part on behalf of LEPRA please call us on 01206 216799.

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programmeNEWS

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fundraisingNEWS LEPRA gears up for a new bike ride in India

Residents of Sirajgonj enjoyed street theatre performances on issues surrounding LF and leprosy

We are delighted to offer the choice of two bike rides in India; our new ride in Madhya Pradesh this November, and around parts of Orissa and Andhra Pradesh in January 2012.

Getting to know you - Jane Langdon meets a group of local school children at one of LEPRA’s projects

Meet Mamatha, a member of the LEPRA India support team

“There can be no better introduction to India than the welcome we had from LEPRA India staff when we went to see the work being done at LEPRA’s KORALEP project in Orissa.” - Penny Murch

The trip coincides with World Leprosy Day, so supporters will be part of helping to increase awareness of leprosy and the stigma experienced by those who have been affected by it.

Every step makes a difference

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fundraisingNEWS

donationFORM You can donate... ...by telephone

...by internet

01206 216700

www.leprahealthinaction.org

...by post to the address at the bottom of the page

Standing Order Form If you feel that you could help LEPRA Health in Action on a regular basis, we would be very grateful. Regular gifts help us plan ahead with confidence because we know we can count on your generosity in the future.

Oliver Allcock and his friends at Ben Nevis

LEPRA’s Edinburgh to St Andrews cycle ride 2011: it rained, the wind blew cold, yet still they came Despite awful weather on 18th June, 700 hardy, enthusiastic cyclists left Inverleith Park in Edinburgh to cycle the 68 miles to St Andrews. The easterly wind made for quite some challenge but people arrived in St Andrews in good spirits, vowing to ‘do it again next year’. We would like to thank all our supporters and helpers on the day, not least of all the Ladies’ Circle in Kinross and the ladies of Fruechie Parish Church, who provided refreshments at the organised stops along the route. LEPRA hopes the event will raise more than £40,000 for the cause. This shows that pedal power does make the difference.

T-shirts galore!

Pupils at Lavington School in Wiltshire had a great time at a workout in June, raising a total of £966 towards LEPRA’s vital work. On the day, 24 thank you t-shirts were handed out in recognition of the children’s fantastic work. This is the highest number of t-shirts that Isobel Thompson, the new community fundraiser for Wiltshire and Oxfordshire, has handed out on one day - so far anyway!

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Banker’s Order

I wish to donate

Snow in June for LEPRA’s three peaks adventurers

n Other nnnnnn Every Month n Quarter n Year n Starting From: Date n n Month n n £5

On 11th June four friends, Oliver Allcock, James Delaney, Rupert Nicolson and William Laxton, undertook the Three Peaks Challenge for LEPRA. The event involves climbing Ben Nevis, Scafell Pike and Snowdon. The team completed the challenge in an amazing 22 hours and 29 minutes - raising a magnificent £2,500 for LEPRA to date. Oliver was inspired to undertake this challenge in support of the work done for many years by his Godmother Alexandra Eversole, who is Chair of the LEPRA Westminster Committee.

£10

Please debit my Account Number

YOUR BANK ADDRESS Year

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Sort Code (top right hand corner of your cheques)

n n n n n n n n n n - n n - n n NAME

Please pay the amount indicated on the left to LEPRA Health in Action, Barclays Bank plc, High Street,

ADDRESS

Colchester CO1 1DD Sort Code 20-22-67 Account No 80151467

POSTCODE

For completion by LEPRA to the paying bank

DATE

This standing order form should be returned to LEPRA and not to your bank.

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Oliver and his friends experienced rain on Scafell Pike and saw very little of Snowdon as they climbed it during the night. They found snow and spectacular views on Ben Nevis, pictured above. Many thanks and very well done Oliver and friends.

To the Manager at

YOUR BANK NAME

Single Donation Form I would like to make a single donation to LEPRA of £ MR / MRS / MISS / MS

INITIAL

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ADDRESS

Local school children make a splash

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On 30th June, Abigail Buckle and Emily Addison swam two and a half miles Abigail (left) and Emily (right) splash and raise in Lake Windermere. They cash for LEPRA swam from Ambleside to Polward Bay in borrowed wet suits. It was cold, dark and frightening. Their friend Natasha rowed in a boat alongside the girls and motivated them to swim faster, talking about the eels in the water. They were extremely brave. Our community fundraiser, Brenda Cosslett, had mentioned The Great North Swim in her school talk. From hearing this they completed the swim on their own initiative at just 13 years old. The school knew nothing of their achievement at the time and were so proud of them. They raised over £100.

n Please make your cheque/postal order payable to LEPRA Health in Action n Please debit my n VISA n MASTERCARD n CAF CARD n MAESTRO Card No: nnnn nnnn nnnn nnnn nnn Security No: nnn Expiry Date: n n / n n Signature:

by £

n Please tick if you require an acknowledgement of your gift

LN3/11

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 money if you attach a stamp to your return envelope. Please treat all donations that I have made for the four years prior to this year and all donations that I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.*

Raising tens of thousands of pounds for LEPRA

Signed

Date

* You must pay an amount of income tax or capital gains tax equal to the tax we reclaim on your donations. You have the right to cancel this agreement at any time by contacting LEPRA in writing.

fundraisingNEWS

donationFORM You can donate... ...by telephone

...by internet

01206 216700

www.leprahealthinaction.org

...by post to the address at the bottom of the page

Oliver Allcock and his friends at Ben Nevis

T-shirts galore!

14 | healthinaction

Banker’s Order

I wish to donate

Snow in June for LEPRA’s three peaks adventurers

n Other nnnnnn Every Month n Quarter n Year n Starting From: Date n n Month n n £5

£10

Please debit my Account Number

YOUR BANK ADDRESS Year

nnnn

Sort Code (top right hand corner of your cheques)

n n n n n n n n n n - n n - n n NAME

Please pay the amount indicated on the left to LEPRA Health in Action, Barclays Bank plc, High Street,

ADDRESS

Colchester CO1 1DD Sort Code 20-22-67 Account No 80151467

POSTCODE

For completion by LEPRA to the paying bank

DATE

This standing order form should be returned to LEPRA and not to your bank.

SIGNATURE(S) TELEPHONE

To the Manager at

YOUR BANK NAME

Single Donation Form I would like to make a single donation to LEPRA of £ MR / MRS / MISS / MS

INITIAL

SURNAME

ADDRESS

Local school children make a splash

TELEPHONE

POSTCODE

EMAIL METHODS OF PAYMENT

by £

n Please tick if you require an acknowledgement of your gift

LN3/11

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!

Raising tens of thousands of pounds for LEPRA

Signed

Date

* You must pay an amount of income tax or capital gains tax equal to the tax we reclaim on your donations. You have the right to cancel this agreement at any time by contacting LEPRA in writing.

we need your help Sometimes it can go wrong

Early diagnosis and treatment is the best way of preventing the disabilities associated with leprosy. Yet 35-year-old Gouranga Sahu experienced complications following treatment. Gouranga noticed a small patch on his left elbow eight years ago. Gradually, it increased in size and lost sensation. More patches appeared, and finally he went to a doctor and received treatment for multibacillary leprosy. Unfortunately for Gouranga, the story didn’t end there. Soon after he started treatment, he developed severe pains and fevers. These were the result of his immune system’s reaction to the dead leprosy bacilli. His body was fighting the bacteria. The correct treatment should have been steroids. Instead, Gouranga was admitted to hospital and treated for typhoid. This misdiagnosis meant that the reactions started attacking the nerves in his face which caused serious damage known as neuritis. He had lagophthalmus, where the blinking function of his eyelids was damaged and his eyes would no longer be protected from infection. Ultimately, this could have led to Gouranga losing his sight. He also developed ‘drop foot’ in both feet.

Despite these disabilities and the fact that he was still being treated for leprosy, Gouranga was not given the steroids that were needed to control his reactions and treat his disabilities. This only changed when the LEPRA-trained District Medical Officer became involved. Because of the delay however, Gouranga’s condition did not improve and he was referred to the LEPRA supported Leprosy Hospital in Cuttack where he is pictured after surgery on his eye and where he will receive surgery for drop foot.

Please help us make it right We help correct misdiagnosis through training programmes for government and private doctors, and health staff. We help with the management of disabilities and reactions through our specialist referral centres. We help people like Gouranga who slip through the net by supporting reconstructive surgery centres and training surgeons to perform the operations. We can only do so with your continued support. Thank you.

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 money if you attach a stamp to your return envelope.

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