Lepra News Spring 2013

www.lepra.org.uk

1

LepraNews Spring 2013

www.lepra.org.uk

In this issue New fast test for leprosy Lepra demonstrates value for money

Turning livelihood dreams into reality Patron: Her Majesty the Queen President: Sir Christian Bonington CVO, CBE, DL Registered Charity Number 213251 (England and Wales) SC039715 (Scotland) A company registered by guarantee. Reg in England No. 324748

2

LepraNews

Spring 2013

Faces of our future - six boys from Bihar who wanted to feature in our new look publication

In this issue Welcome Message from Sarah Nancollas

Dates for your Diary 2013-14 3

Cover story Turning livelihood dreams into reality

4-5

A conversation with Madhavi Sakuru interviews Vagavathalli Narsappa

6-7

Project news Misdiagnosis and misconception surrounding TB in Bihar

8

Meet the team Narsamma Kammela, Laboratory technician

9

Fundraising news Sam Barton runs for our important cause

11-14

How you’ve helped

16

Blaise Joseph Lepra India Catherine Cherry Project officer Irene Allen Asst. editor Leprosy Review

Sarah Thompson Events fundraiser Sam Barton Events volunteer Madhavi Sakuru Project officer Community fundraising team

Ride London-Surrey 100 4th August Great North Run 15th September BMW Berlin Marathon 29th September Dublin Marathon 28th October Lepra India Bike Ride Madhya Pradesh 9th – 23rd November Adidas Half Marathon Silverstone March 2014 Paris Marathon April 2014 Virgin London Marathon April 2014

Editor Joanna Belfield Contributors Sarah Nancollas Chief executive Nicolette Dawson Communications V. Narsappa Chairman National Leprosy Forum, India

Virgin Active London Triathlon 27th and 28th July

Bupa 10K Run May 2014

Photography Peter Caton Colin Summers Sanjay Borade Colchester Gazette

To register your interest in any of these events, please call Sarah Thompson on 01206 216799 or email events@lepra.org.uk

Print and Design Colchester Print Group/ Barber Jackson

For more information, go to: www.lepra.org.uk

www.lepra.org.uk

3

Giving a voice to people affected by disease, poverty and prejudice

Sarah Nancollas Chief executive

You will no doubt have noticed that we have a new logo and a new look Lepra News.

As a charity we have worked with people affected by some of the world’s oldest and most neglected diseases for almost 90 years.

They find themselves trapped at the intersection of disease, poverty and prejudice. Listening to them has been central to our success, and now we need to ensure that their voices are heard more widely to influence decisions that affect them.

We often talk to you about our work with groups of leprosy affected people and in this edition Mr V Narsappa talks to us about how Lepra’s support has helped him to represent their views both nationally and internationally.

At a community level, self-help groups such as those in Bogra highlighted on pages 4-5, are an example of giving a voice to a previously marginalised group. In addition to improving their health and economic status, group members speak with pride about their ability to demand their rights and be treated as productive informed, community members. So far in Bangladesh, we have been able to set up 80 groups with 525 members.

It is important that we are able to measure and demonstrate the actual impact of our work. For example with the Bangladesh self-help groups, the proportion of group members able to eat three meals a day increased from 58 to 90 per cent, a clear impact on health and welfare.

Numbers are of course all well and good. We need them to demonstrate how your gifts make a difference and this Lepra News contains some interesting statistics on our work. Yet as you and I know, people are more than columns of digits on a page.

Each of us has our own story to tell. No-one is more qualified to tell the stories that demonstrate our impact than those whose lives our work has changed.

We hope that you enjoy the stories in this edition of Lepra News, brought to you by those you have helped.

Thank you.

Add your voice “A new fresh face for Lepra is something that we have been able to do through support from London branding agency Industry who kindly donated their expertise.”

If you have any comments, questions or suggestions regarding our new look Lepra News, or are inspired by an article and want to find out more, please send your letters to Joanna Belfield, Editor, or email joannab@lepra.org.uk. Thank you.

4

LepraNews

Spring 2013

Turning livelihood dreams into reality Shamol, from Bangladesh’s Churkuta Village, in Bogra district, runs a self-help group in his village that promotes financial independence and income generation. Nicolette Dawson reports on our meeting with this well-respected local leader.

“I love being leader of the Meghna group. It gives me a lot of joy.

People come to me with their problems.”

www.lepra.org.uk

5

Did you know?

• Lepra organises a series of selfhelp groups in Bangladesh.

These groups advise people on how best to help themselves with health care and income generation

Shamol’s journey began with a meeting with Lepra staff on a visit to a health clinic. “I told them where I lived. A few days later Lepra came to the village to conduct a leprosy survey. They told us their plans to support us through a self-help group.”

Today, Shamol leads a self-help group meeting - members of this small and isolated village are sitting in a circle on the floor of a dimly lit room, clustered around recording books. He is sitting in the centre. An animated discussion is taking place as savings and loan payments are recorded with an orange biro in a large ledger. Shamol smiles when he sees us.

The group of men and women are now small-business people. They are all living with the effects of leprosy.

Those who are not able to write use a thumb print in purple ink to confirm the amounts next to their names.

Shamol says: “This group was started a year ago. We have saved 7,000 taka (£58) between us and Lepra gave us an extra 20,000 taka (£166). With this money, we provide loans for people in the group. So far nine out of ten members have had loans for a variety of businesses like goat rearing, small kitchen gardens or starting a local shop.”

Later, Shamol shares his story over a feast of freshly picked papaya from a tree in his garden. He cuts the fruit open for us to enjoy. His garden is healthy and Shamol seems proud

that we can enjoy the literal fruits of his labour. He talks about his late leprosy diagnosis and how it led to some disfigurement and made walking difficult.

The Meghna group members welcome you to their village

• We advise groups on ways to set up and manage their group, how to open a bank account and make saving deposits.

The members then share this information with the rest of their community • Our projects work with people affected by leprosy to reduce exclusion and poverty, and support natural leaders like Shamol who can teach and motivate others

He explains that in this village there are lots of people who have had leprosy. “Outside this community there is a lot of stigma towards us but here I feel happy because I am not alone with leprosy. The leprosyaffected in the village are the poorest. We get no support from the government.”

“Lepra has empowered us,” Shamol says. “They have answered many important questions like: Where are services available? What are our rights? How can you get what you are entitled to? Information is key.

Lepra realises this and trains us to be heard.

• Our Exclusion to Inclusion project in Bangladesh is funded by the Sasakawa Foundation and has so far helped 474 people like Shamol to generate an income

“I have rights, but if I go to a government office alone I will have no hope of being heard. We now know that if we go as a group we have more power.”

• Last year, 2,000 families were better off thanks to our socio-economic initiatives. With your help we can do even more

“Lepra opened my eyes. They taught me how to do something from very little - how to plant my own seeds in my small garden. I make around 6,000 taka (£50) profit per month.

My child is sick at the moment with a fractured hip and I have medical costs. Before I met Lepra I would be out begging with my daughter so we could fix her problem.”

Our field workers teach people to grow food for consumption and income

6

LepraNews

A conversation with

Spring 2013

Vagavathalli Narsappa

Madhavi Sakuru (MS): What is the main challenge for leprosy-affected people in India today?

Mr Vagavathalli Narsappa is the Chairman of the National Forum for Leprosy-Affected People in India. He recently visited the UK to speak at the launch of a Global Appeal.

He caught up with reporter Seyi Rhodes (pictured above left) who featured Mr Narsappa on a Channel 4 documentary.

In this edition, Madhavi Sakuru interviews him and discusses his life and his campaigning work.

Vagavathalli Narsappa (VN): The main challenge is the lack of economic opportunities for themselves and for their children. Without these opportunities, people with leprosy often have to resort to begging. Begging is neither the way out of poverty nor the way to remove stigma. People in leprosy colonies usually live on the fringes of towns and cities, in dehumanising conditions surrounded by abject poverty.

We are forced to live in solitary confinement so that the rest of the ‘normal’ world can ignore our existence. Life in leprosy colonies is a life of indignity.

www.lepra.org.uk

7

MS: What are the dayto-day issues of living with the disabilities caused by leprosy?

VN: Leprosy related disabilities pose particularly dangerous challenges. When there is loss of sensation in hands and feet, people are susceptible to injuries that they might otherwise have avoided.

These injuries can turn into bleeding ulcers and sores that are in need of regular dressing and care. People living with disabilities caused by leprosy are at a particular disadvantage compared to those with general disabilities and are often in need of greater attention and care.

MS: Can you give examples of discriminatory legislation and its effect?

VN: Long after the 1898 Indian Lepers Act was repealed, there remain 16 laws in India that continue to discriminate against people affected by leprosy. In contemporary marriage and divorce laws, leprosy is still a legal ground for divorce, and women divorced on this ground have no right to support or maintenance. Statutes can be used to deny us housing in general residential areas. There is also a law which disqualifies us from running for village and town council elections, or holding any other public offices. Advocating for removal of these discriminatory laws is an important part of our fight against injustice. We cannot do this alone and need the support of organisations like Lepra to make this a reality.

If these laws are repealed in India, people like me and our future generations will have more opportunities to participate in ‘normal’ life and improve the quality of our existence.

MS: When you meet with people diagnosed and living with leprosy, what is it that they say?

VN: People living with leprosy have two common demands these days – a livelihood and a life of dignity. They do not want to live begging at traffic signals, temples, churches or mosques. They tell me that they’d rather sleep hungry than eat the leftovers they are thrown. They want decent jobs for their children and for themselves; they want to learn skills so that they can earn wages for their day’s toil like everybody else.

We work with anti-leprosy groups to represent the rights of people living in leprosy colonies

MS: How does Lepra help in your work?

VN: An important way in which Lepra helps me is by providing opportunities to participate in local, national and international forums where I can voice the concerns of my people. I was invited to the UK in January 2013 to speak at the launch of a Global Appeal to end stigma and discrimination against people affected by leprosy. This provided one of the best opportunities I have ever had. During this visit, I met three MPs and discussed our work to revoke discriminatory laws. The MPs have committed to raise awareness of this issue within the House of Commons.

MS: What is your message to the people who support Lepra’s work?

VN: I am deeply grateful to all the people who support Lepra’s work. Lepra provides vital assistance to individuals and organisations of the leprosy-affected in our quest for equality and respect. I appreciate your kindness and the empathy you have shown to people like me through your continued commitment to Lepra. We have come a long way in our fight against leprosy. Please help us through the ‘last mile’ by supporting the total elimination of the disease and making it possible for the leprosy-affected to integrate into society and lead a life of dignity and confidence.

MS: Finally, on a more personal level, what are your hopes for your children?

Mr Narsappa receives a national award in India for the best individual working for the cause of people with disabilities

VN: My youngest daughter, Meena Rani, is at university. I hope that one day she will be able to join me in campaigning and advocating for the rights of people with leprosy. I hope that she takes my vision forward and becomes a leader of her generation, making leprosy history not just in India, but worldwide.

8

LepraNews

Spring 2013

Misdiagnosis and misconception behind Bihar’s deadly TB epidemic A new Lepra survey suggests that more than 95 per cent of rural medical practitioners in Bihar have never received TB training.

Rajni Kant Singh, Head of Lepra’s Bihar programme, conducted a survey among rural healthcare providers in the northern Indian state of Bihar. The study assessed 561 rural practitioners on their TB knowledge. The results are alarming: • 73 per cent of the 561 providers are treating TB • 97 per cent have never received TB training • 45 per cent begin treatment without proper diagnostic tests • 70 per cent are not aware of the government TB programme and stop treatment as soon as the patient feels better

This study showed that misconceptions regarding TB were widespread among Bihar’s rural health practitioners. Of those interviewed, 77 per cent thought that patients should be isolated from their families and 62 per cent thought that patients should not attend social functions. TB patients should not sing according to 63 per cent of those interviewed, and 44 per cent felt that patients should not marry.

This level of misconception and lack of knowledge is dangerous. Left undiagnosed, untreated or insufficiently treated, TB can kill. Patients can develop drug-resistant strains of TB, making it difficult to treat. These strains of bacteria can then be passed onto others.

News in Brief Staff at Lepra’s Chetana project ran a training programme for 135 health workers and village volunteers in the Purnea district of Bihar. The session covered early case detection, adherence to treatment, self-care practices and referral of any suspected leprosy or lymphatic filariasis cases to a primary health centre.

The World Health Organisation acknowledges the importance of this study and has urged that its findings are given a wider visibility. The results are symptomatic of a broader problem in Bihar and presentations of these findings are expected to be given at International TB Conferences in the coming months.

We are looking for funds to provide a training programme for these health providers.

The survey is important as 80 per cent of people in a rural environment will initially approach a village doctor when feeling unwell.

“We are looking for funds to provide a training programme for these health providers.”

Residents of ten leprosy colonies in Jharkhand, north-east India, received 289 pairs of protective footwear. These were sponsored by TATA Steel and made by our Sparsh project.

Left A health volunteer took Bhavini’s sputum sample for TB testing Above Healthcare training in Bihar

www.lepra.org.uk

9

Narsamma Kammela is a laboratory technician at a Lepra Referral Centre.

Despite early hardships, she turned her life around and is now an agent for change for others in her community. Narsamma tells her story.

Agent of Change “I was very young when my father died. After his death, my uncle helped my mother to raise and take care of our family of seven children: myself; my two brothers, both disabled by polio; and my four sisters.

Later, in 1991, I married Venkataramana. He worked for the Urban Leprosy Eradication Programme (ULEP) and I stayed at home to raise our two sons.

My husband died suddenly from heart failure in 2002.

Though my uncle continued to provide food and shelter, I had no other source of income. I did not want to be a burden. I wanted to take care of my young family, but I could not find work.

I struggled for almost a year, but then turned to the ULEP, who advised me to contact Lepra. There I met Lepra India’s Chief Executive, Dr Ranganadha Rao. Dr Rao placed me in one of Lepra’s projects, where I cleaned and dressed the wounds of leprosy patients.

After the project finished, I went to Odisha for a two-month training

programme to learn new skills. On completing my training, I began work at Lepra’s Counselling and Testing Centre for HIV in Andhra Pradesh. I worked there for two years, whilst my training continued. I attended a food and nutrition training programme and then became a Lepra laboratory assistant. For the first time in my life I was paid a monthly salary. Now I could provide properly for my children’s welfare.

My sons are older now.

Radhikesh is in the third year of his engineering degree.

Chandramouli is in the first year of his polytechnic degree.

They are very studious boys and secure good marks.

Both children want to study further after their graduation and are determined to work in order to pay for their continuing education.

I am very happy with the way my life has unfolded.

I am now working as a laboratory assistant at Lepra’s Referral Centre at Vizianagaram. I meet with patients and take skin smears to test for leprosy.

What do our lab technicians do?

·

They take slit-skin smears from patients to confirm leprosy.

In this process, they collect small samples of blood or fluid by making scalpel-slits in nodules or lesions suspected to be caused by leprosy

·

They use slit-skin or sputum samples from patients to prepare glass slides for diagnostic microscopy. In this process they smear a sample on a glass slide and stain it with a dye

·

They examine samples on the glass slides under a microscope in order to identify TB or leprosy bacteria

When people come for testing, they are nervous and afraid. I make them feel comfortable - talking to them in a friendly manner.

I conduct the test and send the samples off for testing straight away. I feel happy to help people and play my part in ridding the prejudice they face.

As I was helped by Lepra during my troubled days, I would now like to help the patients who come to me.

This way I feel I can give back something to the community.”

“I am very happy with the way my life has unfolded. I am now working as a laboratory assistant at Lepra’s Referral Centre at Vizianagaram.

I meet with patients and take skin smears to test for leprosy.”

10

LepraNews

New fast test for leprosy

Polio gets its last push could leprosy be next?

A simple, fast and inexpensive new test for leprosy has been developed by researchers in the United States.

“Vaccines are a miracle tool. They prevent disease from striking which is better than treating it after the fact.”

The test, registered in Brazil in January 2013, will be manufactured by Brazilian Orange Life on the understanding that the price will be $1 or less.

“It works like a pregnancy test and requires just one drop of blood,” said Malcolm S. Duthie, who led the test’s development at the Infectious Disease Research Institute in Seattle.

Bill Gates, in January’s Richard Dimbleby Lecture, described the battle to eradicate polio as one of the most difficult tasks the world has ever faced.

Speaking at the annual lecture, Mr Gates described the fight to eradicate polio as “a proving ground, a test. Its outcome will reveal what human beings are capable of, and suggest how ambitious we are about our future.”

What is clear is that even as numbers have reduced, to get to this point has taken a huge amount of effort, global collaboration and funding.

“Its outcome will reveal what human beings are capable of, and suggest how ambitious we are about our future.”

Although the number of new leprosy cases identified each year is half of what it was eight years ago, we have a long way to go.

Lepra’s Chief Executive, Sarah Nancollas, said: “Although leprosy numbers were quick to reduce after the discovery of multi-drug therapy in the 1980s, progress against the disease has stagnated.

“What we need is a massive push for leprosy like that planned for polio. Without it we will continue to see numbers plateau and, who knows, possibly increase.”

Spring 2013

Slit-skin smear samples are taken to diagnose leprosy

The new test is reported to give results in under 10 minutes and is far simpler than the current diagnostic method of cutting open nodules on parts of the body including the earlobe, and looking for bacteria under a microscope.

Trained laboratory technicians are needed

to diagnose leprosy, a rare commodity in the rural areas where the disease persists.

Currently, most cases of leprosy are diagnosed clinically through physical symptoms such as a light patch on the skin, which has no sensation when touched, or nerve damage in the fingers.

What does this mean for early diagnosis?

According to reports, the test is expected to detect infections as much as a year before initial symptoms appear. This has implications for early diagnosis, in particular for the timely testing of family members and close contacts of people diagnosed.

Could this be the tool, given the necessary international investment, to give leprosy its last push? We can see that this test could prove to be fundamentally useful in the fight against leprosy.

www.lepra.org.uk

Running for an important cause - by Sam Barton

11

“I am delighted to have the opportunity to run for Lepra in the London Marathon 2013.”

Seeing our work first-hand David Crump went on our Annual India Supporter’s trip in January. David tells us how it went:

“I am delighted to have the opportunity to run for Lepra in the London Marathon 2013. Needless to say it is fantastic to be able to support an organisation that does such important work for people in some of the poorest areas of the world. Lepra is also a charity that is very significant to my family.”

My late father Rex – who was a consultant ear, nose and throat surgeon in Leicester – secured funding from Lepra in the early 1970s to carry out research into leprosy. He travelled to India a number of times during the 70s and 80s to work with patients at the Victoria Hospital, Dichpalli, in Andhra Pradesh.

Sam with his brother Tom after completing the March half marathon

Rex Barton with a male patient in 1973

His research involved taking nasal biopsies and proved invaluable in the study of the transmission of the disease, which previously had been largely attributed to prolonged skin-to-skin contact – thereby contributing to the high levels of isolation experienced by those affected. The charity has remained close to our family ever since and it is a privilege now to be following in my brother’s footsteps (literally - he completed the Marathon last year, raising over £5,000) by running for Lepra.

That said, the pleasure of supporting such a worthwhile cause has come at a physical cost! During training I have been surprised by the extreme stress long-distance running puts on the feet, ankles and knees. I have survived so far with only a few brief pauses to recover from the occasional niggle, but ice packs have become a daily essential! As a first-timer I am simply hoping to get round the course in one piece, however, I have been told that it helps to have a goal in mind, so I am setting my sights on a sub five-hour finish.”

David Crump (right) at our Blue Peter Health and Research Centre

“I could easily fill a whole issue of Lepra News; however I must be brief. My eyes have been opened, my mind broadened and my knowledge improved. I can better appreciate how small sums make a huge difference and really change lives.

We saw leprosy referral and treatment facilities and other essential and pioneering work being undertaken. In Koraput Treatment Unit, people affected by leprosy or HIV/AIDS live in a place of peace, treatment and, above all, hope. In Nirmal a young man was diagnosed and treated for leprosy early.

He was keen to share what our support had meant. He said: “Before Lepra I had no future.

Now I am healed, I am at college, I can see my future.”

We heard the stories of women who had been totally dispossessed but had now found support and a voice at the Sahyog project.

No travel agent can reproduce this experience!”

12

LepraNews

Spring 2013

Lepra demonstrates value for money We know that our work is effective, but we appreciate that you will want to know that it is done without waste.

Your donations fund our work and help bring positive and lasting change in the health

and well-being of thousands of people. Through a few examples, we would like to show how your investment in Lepra gives excellent value for money.

Lepra spent a total of £4.7 million last year, including all UK and fundraising expenditure.

Some examples:

Health education costs around 20 pence per person reached;

For just

£3 per person we trained a group of 300 Indian women in lace-making and tailoring. This increased their confidence and

a small cost to achieve a large impact and enable us to reach 1 million people each year. In Bangladesh, 52 per cent of those who came forward for TB testing at Leprasupported facilities, did so after attending one of our health education campaigns.

We helped more than 700,000 people in 2012 to improve their health and livelihoods. Though costs vary depending on the service (it is much more expensive to treat the effects of leprosy disability than to provide TB testing) this works out at a cost of under £7 per person. That’s just £7 to change someone’s life.

enabled them to earn an extra £20 per month.

Just £3.50 can

provide training in self-care techniques for a person disabled by lymphatic filariasis. In Puri district, Odisha, 97 per cent of people

trained continued to practice self-care regularly at home.

Of these, 67 per cent experienced reduced swelling and were able to walk more easily as a result.

£5 per year can provide training for a traditional healer. This has huge added value as traditional healers are generally untrained and unskilled, yet in rural India they are the first port of call for 80 per cent of the population.

With 4,000 traditional healers trained last year, we have improved the quality of first-stop medical care for thousands of people.

www.lepra.org.uk

13

Lepra’s cycling adventure to Madhya Pradesh

Obituary We are sad to report the death of John Orrell. John pioneered Lepra’s first India bike ride in 1996 where, at age 63, he made new friends and relished every moment of his trip through the state of Odisha. On this first trip, John witnessed and learnt much about social and health deprivation in India. We remember him as always kind and compassionate, both to the other cyclists and to those he met along the way.

Dates:

9th - 23rd November 2013 This unique and challenging bike ride takes you to real rural India in an experience of a lifetime.

See your money in action:

John Orrell, pioneer of Lepra’ s first India bike ride who died on 12 December 2012.

On his return to Britain, John recalled: “I remember the hundreds of people sleeping like bundles on the railway station floor. I remember the farmer with leprosy with his hands held up in plaster and his feet covered in sores. I remember those who had been treated waiting patiently at the roadside for us. And I remember the welcome and the garlands of flowers from the disabled children at Hoina. I feel humbled and privileged to have shared their lives for a short time.”

John kept these moving experiences with him, giving life-long support to our work. He even enlisted his family for an annual fundraising cycle ride. The most recent of these was in September 2012, when he and his granddaughters Ellie (11) and Molly (8) raised £445.

Sadly, this was his final ride for us as he went into hospital shortly after.

You will cycle to some of our projects in Madhya Pradesh which your sponsorship money will help to fund. You will be filled with pride when you meet Lepra health workers and see how people’s lives are transformed. This trip of a lifetime is sure to motivate you to achieve your cycling and sponsorship goals for us.

Note: A level of fitness is required

as there are about nine days of cycling plus rest days. Cycling distances vary and average 45km per day.

Cost: £995 + taxes (c. £400) Deposit: £250

(comes off your cost total)

Minimum Sponsorship: £1,750

(excluding Gift Aid).

Bring a friend and reduce your sponsorship to £1,250.

Join us as we cycle through tribal villages and towns, through forested areas with deep river gorges.

Sign up deadline date: 31st July

John died peacefully on 12th December 2012, and his family laid him to rest on 4th January in south Devon.

At the service, his many friends remembered his warmth, love of life and unwavering support for people living in poverty. John supported Lepra tirelessly, right up until the year of his death.

Besides his charitable work in aid of the poorest of people, John enriched the lives of so many of us, and we are fortunate to have known him. We send our deepest condolences to his wife Anita, and all his family and friends. We share in their loss of a true gentleman and unflagging champion of charity work.

For an application form and more details

call Sarah 01206 216799 or email events@lepra.org.uk or visit our website www.lepra.org.uk

14

LepraNews

Lepra friends raised £7,000 on the night.

Spring 2013

Lepra glitters at The Groucho!

Stephen Fry called in on the Chelsea and Kensington Lepra Committee’s festive party at The Groucho Club, a private members club for the media and arts. Fresh from his critically acclaimed performance as Malvolio in Twelfth Night, Stephen is pictured here with Lepra supporter Umesh Ummat, Chairman of Brook Hotels.

Thanks go to Stephen Fry for taking the time to attend after the evening’s performance, and to Mr Ummat for his kind and generous support.

Youngster hosted charity tea party

Stephen Fry with Umesh Ummat, Brook Hotels Chairman

Davidson’s Mains Primary shines for Lepra Pupils at Davidson’s Mains Primary School in Edinburgh danced, laughed and sang their way through a fitness workout to raise money for Lepra.

A pupil was so inspired by our fundraising leaflet that she organised her own fundraiser.

Kelsey Grace, 11, was given information about Lepra while in class at St Helena School, Colchester.

The children decided to support our work because they felt we are a very

Another pupil added: “We would like children with leprosy to be able to write and to enjoy a normal life like we do.”

Rather than simply put cash in a donation envelope, Kelsey decided she would host a tea party to raise funds.

The children, families and staff at the school raised £4,100.

Well done and thank you to all involved for your generous and caring support.

She got baking in advance of the party and invited friends and family to an event at her home on 17th February.

Kelsey raised £196.

Pupils at the Essex based school arranged their own fundraising events and they all, alongside Kelsey, did us proud.

worthwhile charity and the money raised would improve the quality of life for many people. One group of pupils said: “We have learned to understand the situation of other children in the world and learned how we can support them to make their lives better.”

Picture of Kelsey courtesy of Evening Gazette, Colchester, copyright retained

Dressed up for Lepra Pupils from Tunbridge Wells Girls Grammar participated in a 45 minute zumba dance workout in fancy dress to raise money for Lepra.

The year 7 girls wore an array of creative and colourful costumes and brought in £2,943. They showed incredible enthusiasm and the smiles on their faces were a joy to see.

Get set, groove!

Tunbridge Wells Girls raise £2,943

Cleo Morris, Jemima and Juliette Trickey held their own cake stall and raised £190.

Thank you to all the pupils and parents for their outstanding effort.

www.lepra.org.uk

15

donation form

Lepra is Registered in England and Wales (No. 213251) and Scotland (No. SC039715)

You can donate... ...by telephone

...by post

to the address at the bottom of the page

...by internet

01206 216700

www.lepra.org.uk

Direct Debit Form I wish to donate £8

£5

£3

Starting from the

Other

monthly/quarterly/annually

1st or

Bank account number

15th day of the next available month

Bank sort code

Instruction to your Bank or Building Society to pay by Direct Debit Please fill out and return the whole form to Lepra, 28 Middleborough, Colchester, CO1 1TG.

-

-

Originator’s identification Number 4

1

6

4

6

Instruction to your Bank or Building Society

Please pay Lepra Direct Debits from the account detailed in this instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this instruction may remain with Lepra and, if so, details will be passed electronically to my Bank/Building Society.

Name and full address of your Bank/Building Society: To the Manager, Bank, Building Society Address: Postcode:

Signature(s)

Name(s) of Account Holder(s)

Date (DD/MM/YYYY):

(please enter as appears on account)

Direct Debit Guarantee: • This Guarantee is offered by all banks and building societies that accept instructions to pay Direct Debits.

• If there are any changes to the amount, date or frequency of your Direct Debit, Lepra will notify you 14 working days in advance of your account being debited or as otherwise agreed. If you request Lepra to collect a payment, confirmation of the amount and date will be given to you at the time of the request.

/

/

• If an error is made in the payment of the Direct Debit by Lepra or your bank or building society you are entitled to a full and immediate refund of the amount paid from your bank or building society - if you receive a refund you are not entitled to, you must pay it back when Lepra asks you to.

• You can cancel a Direct Debit at any time by simply contacting your bank or building society. Written confirmation may be required. Please also notify us.

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

INITIAL

SURNAME

ADDRESS

POSTCODE TELEPHONE

EMAIL* METHODS OF PAYMENT

■ ■

Please make your cheque/postal order payable to Lepra

■ VISA ■ MASTERCARD ■ CAF CARD Card No: ■■■■ ■■■■ ■■■■ ■■■■ Security No: ■■■ Expiry Date: ■ ■ / ■■ Please debit my

■

Signature:

by £

* Lepra will use your information for administration and analysis.

We may send you information on our work and events which may be of interest to you.

Please tick if you require an acknowledgement of your gift LN2/13

Lepra also welcomes regular donations via standing order. 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, 28 Middleborough, Colchester CO1 1TG You will save us money if you attach a stamp to your return envelope.

I confirm that I am a UK tax payer and I would like Lepra to reclaim the tax on this donation, future donations and all previous donations that I have made in the four years prior to the date of this declaration. I also confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for each tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities or Community Amateur Sports Clubs (CASCs) that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify.

Signed

Date

3

16

We need your help

Suffering from TB and forced out of home to live in little more than a square box, Ruhul’s life, in his words, was “falling apart”. Here was his corrugated iron prison and he was on TB’s death row.

Ruhul tells us his story.

“Before I had TB my life was fine. I was a tailor and was married with a loving wife and daughter. I used to earn 2,500 taka (£21.75) per month, which was a good wage for this area.

Then I caught TB. I was so weak that I couldn’t do my job anymore.

I had untreated TB for six months. It felt like a fever and I coughed often, especially in the mornings and at night. It was hard to sleep. My

Ruhul lives in the village of Hazrahati in Sirajgonj district of Bangladesh. Ruhul has TB and has fought to overcome prejudice and exclusion.

brother took me to the local health clinic and a Lepra health worker diagnosed my condition. It was once I began treatment that my family threw me out of my home.

When Lepra saw my isolation and the stigma that the TB was causing, they visited the village and taught people about the disease. This changed everything.”

The community forced me to live in a small shed outside the village. At this point I weighed just five-and-ahalf stone and was in poor health. I thought I was dying. If Lepra had not helped me in time I would have been dead in a matter of weeks. Villagers made me live and sleep on the floor of a four foot square metal box that I was forced to call home.”

Ruhul concludes: “I have finished my treatment and have moved into my old house. My life is back on course and I have gained weight. I have hope, but there is still a long way to go until I am strong and healthy.”

Ruhul needed someone to support him to take his medicine correctly.

Lepra trained his cousin Saddam as a treatment provider to dispense the vital drugs.

Ruhul continues: “The social problems worsened. My wife and child left me and have not returned as I had no money to support them.

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

facebook.com/LepraHealthinAction @Lepra_HinA

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