LEPRAnews

In this issue:Disease and banishment – one woman speaks outFrom devastation to inspiration

September 2012

www.leprahealthinaction.org

Women: Overcoming

poverty, disease and prejudice

LEPRAnews September 2012

Dear FriendLEPRA’s staff conference takes place this week. This annual event will bring together our remarkable staff: from community fundraisers in the furthest corners of Great Britain, to our Buniyad project officer in India. The conference will examine how our work engages with individuals and communities and how, through our work in health education and advocacy, we go beyond cure to build futures. Undoubtedly, there will be discussion of women’s particular issues in health and development. This edition of LEPRA news focuses upon women’s issues and I hope that you find it interesting.

Reflecting on my fundraising role,I will be presenting the patient story that has most moved me. I would be very interested to know which LEPRA story you would choose as the most moving and interesting. Please share your thoughts.

Joanna BelfieldEditor, LEPRA News

Message from the CE 3

Cover Story 4

Programme News 6

Programme News 8

Programme News 10

Fundraising News 13

Community News 14

Case Study 16

Disease and banishment - Kalpana speaks out

Women’s poverty, women’s health

LEPRA pioneers leprosy research

From devastation to inspiration

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In thisissue

Reg Charity no. 213251Charity registered inScotland no. SC039715

LEPRA Health in Action28 MiddleboroughColchester, CO1 1TG01206 216700www.leprahealthinaction.org

EditorJoanna Belfield

ContributorsSarah Nancollas – Chief ExecutiveMadhavi Sakuru – Programmes OfficerIrene Allen – Asst Editor Leprosy ReviewCatherine Cherry – Programmes OfficerNicolette Dawson – Communications Beatriz Lopez – JournalistJen Cornwell – VolunteerLizzie Dearling – Events FundraiserKaren Page – Development OfficerRos Kerry – Community FundraisingCommunity Fundraising Team

PhotographySanjay BoradePeter CatonColin Summers

Design and PrintThe Print Connection, 01473 810230

Dublin Marathon 201229th October

India Bike RideMadhya Pradesh 201210th - 24th November

India Bike RideAndhra Pradesh 201319th January - 3rd February

Supporters’ Trip 2013 19th January - 30th January

Paris Marathon 2013 7th April

London Marathon 201321st April

Edinburgh Marathon 201326th May

Great Swims (1 mile)Various dates and locations

Virgin Active London Triathlon 2013September (date tbc)

Berlin Marathon September (date tbc)

For more information about these fundraising events, email events@leprahealthinaction.org or telephone 01206 216799. More details are also available at www.leprahealthinaction.org.

Dates for your Diary 2012-13

School education programmes reach girls with health messages

messagefromtheCE

This edition of LEPRA News places a spotlight on the importance of women in development. Although our work spans across gender and generations there is sometimes a need to focus on the additional issues that can be faced by women living in poverty. This emphasis can lead to a much stronger outcome for the whole community.

One fact that has stayed with me since I started working in development is that deaths of children under five are reduced by 6 to 9 per cent for every year of education that the mother has had, even if she has only been to school for two to three years. It is considered that the impact of female education on child mortality is greater than income and access to health facilities combined. In this case it is clear that an intervention focused on women has significant impacts for her whole family.

It is now more than 30 years since the adoption of the Convention on the Elimination of All Forms of Discrimination against Women and yet, as

Margaret Chan, Director General of the World Health Organisation observes: “Many girls and women still do not have equal opportunities to realise rights recognised by law... We will not see sustainable progress unless we fix failures in health systems and society so that girls and women enjoy equal access to health information and services, education, employment and political positions.”

Some of the most inspirational agents of change at a community level are women. They are driven by a desire that future generations should not face the issues that they have faced. In this issue you will read the story of Menaka Devi, who together with her friends and neighbours is determined to reduce the stigma faced by those with lymphatic filariasis.

So whilst LEPRA will continue to transform the lives of all people affected by leprosy and other diseases of poverty and discrimination, we will also continue to ensure that the particular needs of women are taken into account in all that we do.

I do hope you enjoy this LEPRA News: without your support none of our work would be possible.

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LEPRA’s commitment to women in poverty by Sarah Nancollas

Kalpana was just 17 when she married Nayan, a soldier in the Indian Army. Her mother, Uma Devi said: “I had seven daughters and two sons; I had to marry Kalpana off as soon as she finished secondary school so I had one less daughter to worry about.” Due to poverty and tradition, 69 per cent of girls in Bihar are married before they turn 18.

Being an infantry soldier, Nayan is frequently posted on the borders of the country and gets to see his family only twice a year. On one such visit he discovered patches on Kalpana’s body and suspected she had leprosy. He was so angry that he tied Kalpana up and, behind closed doors, beat her with a stick. Other family members ignored her cries. Three years ago, Nayan forced Kalpana out of their house. With her five year old daughter, Anshu Priya (pictured with Kalpana inset and on the front cover), Kalpana returned to the cramped conditions of Uma Devi’s home.

Kalpana turned to LEPRA in February 2011 and received treatment for multi-bacillary leprosy. She has now completed her course of multi-drug therapy and the patches on her body have disappeared. This is because LEPRA caught her condition in time. The patches have faded but the emotional scars remain. When Kalpana shared the

news of her recovery with Nayan, she hoped he would take her back. He refused. With LEPRA’s help, Kalpana filed for divorce, demanding payments from her husband for the maintenance of their daughter. The case is pending in court as Nayan refuses to attend hearings during his annual leave.

According to the recent National Family Health Survey of India, 59 per cent of women in Bihar face domestic violence. A woman is twice as likely to face domestic violence if she has contracted a disease like leprosy or HIV. The survey also found that 51 per cent of men and 54 per cent of women thought it justifiable for a man to beat his wife. This makes our work in communities that much tougher. Whilst physical and sexual violence against women is prevalent throughout the world, the high level of acceptability in India is disturbing. This is despite a progressive Domestic Violence Act enacted in India in 2005 outlawing all forms of violence against girls and women.

For the first time in years, Kalpana came forward to talk publicly about the mistreatment she had experienced for having leprosy. She spoke up bravely during LEPRA’s recent social audit of the Munger referral centre and said that she could not have shared her story without LEPRA’s support.

Disease and banishment - a woman speaks out

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COVERstory

This is the story of Kalpana. It is a story where the burden of poverty and leprosy is made worse by the horror of domestic violence. For the women of Bihar, it is a story that is sadly familiar.

Domestic violence takes its toll on women and children

COVERstory

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Social audits – a tool for transparency and effectivenessEarlier this year, LEPRA conducted a social audit of its projects in Bihar. All activities and accounts were made available for public scrutiny to demonstrate transparency, accountability and improved performance.

Social audits are meant to be used as a tool to fight corruption in India, to plug the leaks in public expenditure where officials are obliged to reveal all documents. Audits can be delayed due to a lack of political will and/or vested interests: a previous audit in Bihar resulted in a murder enquiry, which delayed audits within the state.

This was LEPRA’s fourth social audit and was well attended by beneficiaries, local government officials, auditors, media and the general public. LEPRA has also conducted project audits in Andhra Pradesh and Odisha. One of the key requests was for LEPRA to increase its outreach and expand services to adjoining districts. We do not have adequate funding to extend our reach in this way, yet with your support, we hope to be able to do so in the future.

Areas of work What we do

Fights for the equal rights of women

• File cases against those who force their wives to leave because they have contracted leprosy, LF or HIV

• Fight for rights to property and alimony, especially when children are involved

Alleviates conditionsand their symptoms, rehabilitates

• Provide immediate access to health care for people with leprosy, LF, TB, HIV, malaria and kala-azar when there are no other health providers within reach

• Run community-based rehabilitation programmes to prevent disability among leprosy and LF patients

Promotes independenceand improved quality of life

• Offer livelihood skills training, provision of grants and loans to individuals, as well as on-the-job training

• Provide employment within LEPRA’s projects

• Build and support community-based organisations and self-help groups set up by leprosy and HIV-affected people

How LEPRA helps

LEPRA supports Kalpana and Anshu Priya in their fight for their rights

LEPRA responds to questions posed by beneficiaries and community members

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LEPRA’s work is informed by a sharp awareness that the causes and the problems associated with diseases such as leprosy, LF, malaria and HIV/AIDS are exacerbated by poverty. We recognise that poverty is not defined solely by poor material circumstances, but also by a poverty of status and life-chances. Whilst LEPRA works equally with men and women, it does have to work within the special conditions experienced by women. It also campaigns against these conditions. This article outlines some of the key experiences, conditions and issues for women in India and Bangladesh.

Women’s low status

In many developing regions of the world, women often have limited social status. The continuing prevalence of female foeticide and infanticide in India is a poignant indicator of the poor status and the meagre perceived worth of women. The India Census Report 2011 states that female foeticide has resulted in a skewed child sex ratio – for every 1,000 boys born there are only 914 girls. Despite the fact that women run homes, do most of the manual labour in the fields and building sites, and produce the next generation, most women are considered to be second class citizens. Contrary to national laws, several states in India allow the exclusion of widows and daughters from land and property inheritance. In rural areas up to 85 per cent of women have virtually no freedom of movement in village communities. They tend to have little say in intimate relations and contraception is often denied them. This can lead to multiple

Women’s poverty – women’s health

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Poverty impacts health, education and emotional well-being

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pregnancies which put a further strain on family resources, and often on the woman’s life. In poorer families, girls as young as 10 are married off, often to men considerably older than themselves. The life chances of these young girls is blighted by serial childbirth, when they are still children themselves.

Women’s health risks

Childbirth is still a risky business in India. For every 100,000 babies born, 450 of their mothers will die.

Pregnant women are four times more likely to contract malaria due to changes in their body which make them more attractive to mosquitoes compared to non-pregnant women. If they contract the disease it can significantly increase the risk that they will miscarry, have a stillbirth, or produce a baby with a low birth weight that will often die within its first year.

Women with leprosy, particularly multi-bacillary leprosy, tend to develop reactions and neuritis during pregnancy, and for several months after delivery. This can result in increased risk of pain and deformity.

Women’s bodies and women’s work

For women, marriage is usually their primary source of security. Women with diseases or disabilities often find it hard to find a husband. Those affected by LF suffer from stigma caused by the enlargement of their legs, arms and genitalia. Those with LF, HIV or leprosy are often thrown out of the family home and their children may be taken away from them. By contrast, if a man contracts any of these diseases his wife is expected to stand by him and support him. Women in families are often not allowed to seek treatment on their own. Men make decisions on whether their wives and children can access healthcare. Superstitions still abound that certain diseases are passed on through the mother’s milk.

Even the law can prove to be an obstacle. Almost all of the marriage and divorce laws of India consider leprosy as grounds for divorce, with the Special Marriage Act of 1954 declaring leprosy ‘incurable’. LEPRA actively campaigns for the repeal of this harsh and outdated law.

What we offer women:

Training to raise awareness on HIV preventionOver the past six years, LEPRA has trained 438,622 women from Andhra Pradesh, India’s highest HIV prevalent state, in topics such as HIV transmission and prevention, awareness of HIV/AIDS services and improved hygiene.

Livelihood training for women

Women are often financially dependent on their husbands, having little financial security for themselves. LEPRA provides women affected by leprosy and HIV with livelihood skills training to increase their opportunities for earning an income. This increases both their own financial independence as well as contributing to the household income.

Support for leprosy and LF-affectedwomen to help them reintegrateback into their families

LEPRA provides social support to women and their families. When a woman experiences discrimination from her family, we offer counselling to increase understanding of the disease and its causes, and mediate disputes so that women are accepted back into their families by husbands and parents.

Prevention of mother to child HIV transmission

LEPRA provides support to expectant mothers, encouraging HIV testing during pregnancy, and hospital based births. HIV positive mothers are then given drugs to reduce the risk of HIV transmission to their baby during delivery. A LEPRA project in Madhya Pradesh ensured that 50 HIV positive mothers delivered 50 HIV negative babies.

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One of the most important areas for advancement is the development of better treatments for affected individuals. The current treatment regime called MDT has been used for 30 years and, although still highly effective, requires patients to take a 6-12 month course. Without intensive monitoring, such long-term treatment heightens the risk that patients will not complete the course. In addition, cases of drug resistance to MDT are beginning to occur, making the need for new drugs more urgent.

Another important area for development is early diagnosis. Currently, there is no test for diagnosing leprosy in the early stages, despite the fact that the incubation period is usually several years. The disease is not normally diagnosed until at least the first obvious sign, when nerve damage will already have occurred. With early diagnosis the disease could be treated without a person suffering its disabling effects.

LEPRA’s research laboratoryThe LEPRA Blue Peter Public Health Research Centre (BPHRC) was established in Hyderabad, India in 1999. Funded by a highly successful Blue Peter television appeal for LEPRA, it conducts both scientific research to address gaps in leprosy knowledge, and field research to improve practices in service delivery and policy.

The centre is currently researching the leprosy bacterium, M. leprae, to gain a better understanding of its behaviour. Findings should help in planning future strategies to combat the disease. For example, LEPRA scientists are studying individuals with leprosy to identify their individual immune responses and correlate this with how they react to treatment. This will allow us to identify specific early biomarkers of leprosy infection - an important step in developing a test for early diagnosis. It would also indicate how and why people react differently to leprosy, allowing us to develop more appropriate and effective methods for treating them.

Another project involves the study of leprosy ‘susceptibility, genes’. These genes have already been identified, and we are carrying out further studies to determine the specific role of the genes in disease contraction and progression. If we can discover the mechanisms by which a gene increases susceptibility it could give us clues as to how M. leprae first infects an individual and indicate how a vaccine might be developed to protect those most susceptible.

Research results from BPHRC are the foundation upon which LEPRA is able to develop new methods for improving leprosy control and treatment.

Preparing the medium for TB research. BPHRC also conducts TB studiesLEPRA

pioneers leprosy researchLeprosy is one of the oldest known diseases, so it seems incredible that we are yet to understand fully how the disease is transmitted. This discovery would represent a huge step forward in leprosy control and underpin new methods for preventing and combating the disease.

How is leprosy spread? BPHRC scientists research the factors

LEPRAteam

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The dedication of front line health workers Jamuna Meher is a LEPRA Community Health Promoter in Odisha, India. In this article, Communications Officer Nicolette Dawson interviews Jamuna on her role and the experiences she faces on the ground.

How would you describe your role?As a frontline field worker for LEPRA, I help local people access treatment and tackle issues like stigma and discrimination.

Can you describe briefly the communities you work in and some of the challenges you face?I work in Koraput district, which is inhabited largely by tribal communities including Kondha, Paraja and Jhadia. Thirteen different dialects are used and most people are daily-wage labourers. It is often difficult to locate individuals, so I make sure I carry full client details.

Most tribal villages are without proper roads and lack public transport facilities. Any electricity supply is often non-functioning or erratic. The threat from Maoist Naxalite groups is widespread in the region and disrupts our work. The Naxalities would not harm us – they know that our work helps the tribal communities. However, communication to these areas, already difficult, gets affected during tense situations.

What do you do within these communities?As a part of the LEPRA Sahyog project, I am involved in its TB programme. I work with sputum collection centres to ensure that samples are transported safely to the nearest microscopy centre for diagnosis. Whenever I come across people giving up on their course of treatment, I visit their home and try to persuade them to continue. I also speak to their family about the importance of their support in ensuring adherence to the treatment process.

I conduct community and school meetings, and use film and puppet shows in educational programmes to increase awareness of leprosy, TB, malaria and HIV/AIDS. I support government health initiatives like immunisation, epidemic management and other health programmes.

I regularly consult with local government health workers and advise on individual treatments.

What are the most pressing needs for your team?Funding for awareness activities is crucial. It increases people’s knowledge on these diseases and where to go for help. Urgent attention is needed to fight the growing menace of TB and HIV/AIDS. Providing services is a challenge owing to difficult terrain and poor communication facilities, but it is something we are committed towards.

Work by Jamuna Meher and the rest of our team in Odisha has meant the establishment of 180 fully functioning and sustainable sputum collection centres across three tribal districts. This has saved lives by improving case detection and cure rates for TB and TB-HIV.

Making health available to communities most in need

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From devastation to inspiration: how one woman’s diagnosis led to the treatment of others

From left: Makari, Menaka, Putul and Fulo are determined to reduce stigma for others

Menaka Devi from Bihar, India, has lived with lymphatic filariasis (LF) for 32 years. Until her fourth pregnancy, she lived a normal, happy life as a housewife with her husband Lakhan and their three children, in a comfortable home. At 52 years old, she is a mother of six.

Menaka’s life took an unfortunate turn during her fourth pregnancy when her legs began to swell and she came down with a terrible fever that would return every 14 days. Everybody believed the swelling and fevers were related to a difficult pregnancy and even her doctor assured her it would pass once she gave birth.

For almost 30 years she had regular injections and other medicines to help her cope with the swelling of her right leg and the recurring fevers that left her bedridden for days, shattered her self-esteem and plunged her into a deep depression. The medicines offered some relief for the fever, but were ineffective against the continued swelling in her leg. Life became difficult as she was expected to fulfil her household duties and bring up the children. Unable to walk long distances, or bear the weight of her own limb, she was eventually unable to access the first floor of their home.

With little information available to her about LF and the disability that crippled her physically and emotionally, Menaka stopped attending social gatherings and rarely entertained guests. She was embarrassed by her appearance; her own depleted self-worth kept her a prisoner to the disease.

Menaka learned she was not alone: two neighbours had also lived with the condition for more than 20 years. Menaka’s cousin Putul has had LF for eight years. Putul is a vibrant 35 year old woman who is so impressed with LEPRA’s work in reducing the painful symptoms of the disease that she is spreading the word on our work. She is proof of the effectiveness of LEPRA’s health talks and disability prevention camps.

Putul heard a broadcast by a LEPRA health education van promoting the disability prevention camp and the opportunity to seek a free

consultation. The treatment and care provided by our staff gave her a better than expected outcome: her leg swelling, once severe and with many folds, had reduced dramatically in just two months. Determined to help others, Putul began her own campaign to inspire others that they too could have life-changing results. She encouraged Menaka and her neighbours to visit a LEPRA health centre where they were looked after.

Upon hearing Putul’s story of hope and witnessing her cousin’s reduction in disability, Menaka felt a renewed confidence - her condition could be improved by visiting LEPRA’s centre. She was impressed that on her first appointment she received physiotherapy. Menaka and her neighbours’ treatments started in December 2011. They all confirm that their fevers have finally stopped, acute attacks have become less frequent, and swellings are beginning to reduce.

After 32 years of suffering with LF, Menaka is finally able to walk up the stairs of her home. Her neighbour Makari says that the perception of people suffering with LF needs to change. Self-care practices are the key rather than long term medication: “Long-term medication is not necessary if you have a proper knowledge of self-care. For 20 years I had an infection because I was not cleaning it properly and with ointment it has already reduced.”

The women agree that more needs to be done to spread the word about LF and the available treatments. “Interest needs to be generated,” says Menaka. “It is an easy, inexpensive and independent treatment that with regularity you see the benefits.” They believe the disability prevention camp is invaluable in promoting awareness and should be further promoted in order to reach many more people affected by the disease who live in isolation.

The four women have become ambassadors of LEPRA’s work within their community. They are enthusiastic about creating a self–help group for people living with LF. They believe that a small social group is what is needed to bring people together to promote self-esteem, healing and a sense of belonging.

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LEPRAteam

After completing two weeks work experience at LEPRA’s UK office, I travelled to India with a charitable trust. While there, I visited some of LEPRA’s projects. The opportunity to see these was very exciting, and once I had observed the hard work being undertaken to combat stigma, discrimination and the physical impact that such diseases can have, the importance of the work and funding became ever more apparent.

Before working for LEPRA, my understanding of leprosy was limited. I thought that anyone infected with the disease would suffer from terrible deformities. After meeting some patients this idea soon changed. I came to the conclusion that a number of misperceptions and anxieties about leprosy are drawn from misguided information.

Together with my university friend Max Baiden, we witnessed the stories of many people. The first was 65 year old Elliah. He had travelled 186 miles to reach LEPRA’s Dhoolpet Leprosy Referral Centre, after his clinic was unable to control his re-occurring symptoms. He showed us weeping sores that covered his back, chest, arms and ears, and the doctor added that he’d

been suffering from severe chills, fevers, joint and bone pains. His age and vulnerability made this case touching. He had been battling with leprosy for five years.

My time at LEPRA taught me that anyone, at any age can be infected by leprosy. However, this still didn’t prepare me for meeting 16 year old Jyothi. Her case was particularly moving as she was so young and her face was wet with tears. Her situation was also rare - she had recently recovered from surgery which repaired a hole in the roof of her mouth, and now the bridge of her nose had collapsed. The doctor said she was asking him when all this would be over. It was hard to watch, and the doctor confided that all he could do was offer the assurance that it will be over one day.

In these two cases it was the symptoms that shocked us most. We had been ready to see deformed hands and feet but had not expected to see such sore patches of skin, and collapsed body parts. We were also taken aback by the emotional strain that this disease is having. We were able to empathise with Jyothi in some ways, as being fresh out of teenage years ourselves, we knew it must have been very hard to suffer facial deformities at an already emotional and hormonal time. With the care that is provided by LEPRA, both patients will start recovering and surgery has been arranged to repair Jyothi’s nose.

After talking with both staff and patients, it became very clear that stigma and discrimination are a huge problem for leprosy-affected people. Stigma prevents people from seeking medical treatment and limits life opportunities in society. Others do not want to believe they are infected; and choose to ignore their disease. This behaviour can worsen the severity of their condition and cause more hardship in their lives. Educating entire communities about every symptom of leprosy, and what it means to have leprosy, is so vital. Why should a person fear disclosing their health condition because others have a lack of understanding of leprosy?

Opening my eyes to leprosy by Jen Cornwell

“Being fresh out of teenage years ourselves, we knew it must have been very hard to suffer facial deformities at such an already emotional and hormonal time.”

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Twelve years ago, Jenny (63),was diagnosed with osteoporosis. She was thought likely to need a wheelchair. Her doctor recommended high impact exercises including running. Determined to do whatever she could to slow the degeneration of her bones, Jenny started running for the first time since leaving school. After building up her stamina on treadmills and at local fun runs, she started road running at the age of 60.

Jenny caught the running bug after taking part in the Great North Run. After several LEPRA overseas bike rides, her next challenge was a marathon. Jenny signed herself up on the LEPRA team, started a training programme and reached her fundraising goal of £1,750.

Race day arrived and Jenny took to the start in Greenwich wearing her LEPRA vest. “My pace was steady throughout and I kept my promise never to stop even when I passed friends or

family as I know how painful it is to restart. It was particularly difficult not to stop at the LEPRA cheering point, but I smiled, gritted my teeth and pressed on. It was a most wonderful event with a fantastic crowd cheering for every bit of the 26 miles. The constant cries of ‘come on Jenny’ gave me a boost.”

Jenny completed the marathon in an amazing time of 3 hours 47 minutes - coming eleventh in the 60-64 age group. “As I finished I vowed ‘never again’ but after a marvellous welcome by friends and supporters I was already thinking about the next one. Roll on 2013!”

LEPRA had 20 runners who all completed the 2012 Virgin London Marathon. To date a staggering £37,800 has been raised and we would like to thank them all for their hard work and dedication.

LEPRA is always looking for keen and energetic people who are up for a charity challenge. We are currently recruiting people for the Dublin Marathon in October 2012, and our India Bike Ride in January 2013. For further information on our running, cycling and walking events, please call Lizzie on 01206 216799 or email events@leprahealthinaction.org

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Grandma’sLondonMarathon challenge Jenny proudly shows off her London Marathon medal

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Kyle and Charlie complete 11 mile sponsored walkTwelve year old Kyle Darragh completed a sponsored walk from his home in Barnstable to Braunton to raise money for LEPRA. Kyle said: “I heard about leprosy at school. It made me sad to think that many children are being left disabled. I wanted to do something to help.”

Kyle was accompanied by his friend Charlie and they planned the walk themselves. They set off at 10am with packed lunches and a map, and returned after 7pm.

The pair raised £150 in sponsorship, and Barbara Tinsley from LEPRA said: “It was wonderful to learn that Kyle and Charlie had done this on their own initiative. Young people like Kyle and Charlie do so much for LEPRA with their fundraising and we are extremely grateful.”

Scootathon for LEPRA Following a fundraising appeal at Ivanhoe College in May, Scooter Kidz Charlie Smith, Kieron Ward, George Hincks, Cameron Woods, Matthew Barlow and Euan Bell decided to raise funds for LEPRA by scooting 15 miles because of our inspiring work.

They scooted in wet and windy weather – the going was tough, but the Scooter Kidz did it! They raised an amazing £580 through the support of their families and friends. Thank you Scooter Kidz!

Rain did not stop Irene on the Hadrian’s Wall Trekathon LEPRA’s Assistant Editor of Leprosy Review, Irene Allen, recently raised an impressive £615 for LEPRA by taking on the Hadrian’s Wall Trekathon. Despite atrocious weather, Irene and 98 others braved and completed the extreme trek in the teeth of a gale, strong headwinds, heavy rain, mud, liquid manure and floods.

Irene completed the 26 mile trek in 11 hours and 40 minutes, arriving at Lanercost Priory on ‘automatic pilot,’ but triumphant. Many who had registered for the trek on 23 June stayed away and more dropped out en route. Irene said: “If anyone tells you Hadrian’s Wall is flat – they lie! Had the weather been kinder it would still have been tough, but the beauty of the countryside would have more than compensated. Yet visibility was poor,and the need to press on meant we couldn’t linger even whenit was clear.” Thank you Irene - you deserved every penny!

St Leonard’s Junior School children raise £6,000Pupils at St Leonard’s Junior School in St Andrews took part in a sponsored run for LEPRA. The run, as well as profits made at the school’s Christmas fair, raised a terrific £5,984. Headmaster Andrew Donald, said: “I am delighted that the pupils raised such a significant sum. The children responded well to a very moving and informative talk which highlighted how much our efforts can contribute and help those suffering from leprosy.” Thank you to all pupils and parents for your efforts and generosity.

Retracing the ancient Roman paths of Hadrian’s Wall…in the rain!

Pupils ran their hearts out for LEPRA

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Constant coughing from undiagnosed TB meant that Renuka was forced by her husband to sleep with the animals outside her small mud home. Thin and tired she visited her local clinic to seek advice from a doctor. The clinic was shut.

One sunny day Lata, an accredited social health activist (ASHA), visited the village and met Renuka outside her home. She listened to her sorry tale. Lata saw how thin and listless Renuka appeared and knew she needed urgent help. Her poor living conditions and lack of treatment meant that her condition would worsen. What’s more, her children would also be at risk.

The doctor who was supposed to visit the clinic was not doing so, and Renuka was not the only local person experiencing TB-like symptoms. With no authority to affect any change herself, Lata had been taking people to a clinic almost a day’s journey away for diagnosis and treatment. It is a difficult journey for someone as ill as Renuka but she knew she must make it or die. On their return home, Lata monitored her TB treatment through what is called DOTS (directly observed treatment short-course).

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Joiningthe DOTS

Renuka sits outside on her bed, with the animals close by

When LEPRA came to the area, Renuka at last had somewhere to go for help. LEPRA was in a position to exert pressure to ensure that a doctor would make visits to the local clinic, something that should have been happening all along.

This ability to negotiate and exert pressure at a local government level, as well as form direct community links, is made possible by you. This means that people like Renuka can be diagnosed and treated locally and lives will be saved. By ensuring that communities are linked with DOTS treatment, we prevent the spread of TB and the development of drug-resistant strains.

What is an ASHA?

ASHAs are local women trained to act as health educators and promoters in their communities. They form part of the general health care system in India. LEPRA supports ASHAs with training on how to administer DOTS.

Lata administers Renuka’s TB treatment