Winter 2017

LepraNews www.lepra.org.uk

In this issue World Leprosy Day and how you can get involved

Patron: Her Majesty The Queen

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LepraNews

Winter 2017

Stop Press! Her Majesty The Queen sends greetings to Lepra and all our supporters and is delighted with our Royal Patronage book, gifted to her for her 90th birthday.

In this issue Page 3

‘Leper’ no more

Page 4 - 5

Life in a leprosy colony

Page 6

World Leprosy Day

Page 7

What you’ve been up to

Page 8

Let us tell you about…

Keep up to date with the latest news on our projects and campaigns on social media:

Facebook.com/LepraHealthinAction @Lepra_HinA Instagram.com/lepra1 Our front page features the children of a person affected by leprosy in Mahbubnagar in India

BBC Radio 4 Appeal It’s time to make sure your radios are tuned in and the speakers turned up because we’ll be making an appearance on BBC Radio 4 on Sunday the 15th of January 2017. We are one of the charities featuring on the Radio 4 Appeals programme and are proud to say that author Victoria Hislop will be presenting our appeal. She’ll be talking about leprosy in India and highlighting the work we do in schools to find cases of leprosy in children. Victoria has been our ambassador since 2013 and became involved in our work after researching leprosy for her bestselling novel The Island. She has visited some of our projects in India and seen first hand how the ‘forgotten disease,’ as many believe it to be, affects children, women and men. For early risers you can listen in at 7:55am but for those who love a Sunday lie in, we’ll be on again at 9:25pm and then on Thursday 19th January at 3:25pm. Don’t forget to tell your family, friends and co-workers and, after you’ve had a listen, get in touch and let us know what you thought!

www.lepra.org.uk

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‘Leper’ no more My name is Jayashree and I am the Vice Chair of Lepra in India. I have worked with Lepra for many years now tackling leprosy and the misconceptions that come with the disease. In fact, I have a personal investment in the work we do. As a young girl I experienced leprosy. I was lucky enough to be diagnosed before any major disabilities were formed and completed treatment. After taking the medication, physically I was cured but, what took longer to deal with was the psychological impact the disease left me with. I felt the stigma and shame that many do when they are diagnosed with leprosy, but my wonderful family gave me so much support. With this I was able to go on to become a successful chartered accountant but the fact that I had experienced leprosy stuck with me, and the word ‘leper’ stayed with me for a long time... That was until I decided to give it up. I had heard it used so many times in conversations and I think it is derogatory to call someone who is affected by the disease a ‘leper’ or even to use that term in conversations to describe an outcast. The word denotes something inhuman – as if the person affected has no place in mainstream society when nobody should be made to feel that way, especially when they have an illness that is entirely curable. Leprosy is a simple disease, easily treated and of no consequence if detected early. There is no need for a person affected to be ostracised from mainstream society. By titling someone a ‘leper,’ society is stripping that individual of all dignity, of humanity and relegating the person to the dark lanes of despair. We don’t want to be doing that which is why I’m saying we should pledge today to remove the word from society and to let anyone we hear using it know that the word causes much offence.

If you hear someone use the term ‘leper’ you can direct them to www.lepra.org.uk/leper-no-more where they can find out more about the damage this word causes. Jayashree PK Vice Chair of Lepra in India

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LepraNews

Winter 2017

Life in a leprosy colony Some people have read about colonies in books but very few think that such places still exist. Unfortunately they do and although it is unusual for those affected by leprosy to now be sent away to live in one, many colonies still have up to 100 residents. We provide support to some of these communities by working with them to make sure they have access to medical care, disability benefits and protective shoes. Sudpada colony is in a remote area in the Indian state of Odisha. Its 20 or so buildings are made out of mud and the 89 residents prepare their food in a single pan balanced on a single flame. Some of the residents have lived here for over 70 years having being sent away by families they’ve never seen again. Some were able to find comfort in one another, get married and start their own families, which is why several children can be seen running among the dirt and rubble. We help to fund their education but

residents say it can still be a struggle to get the children to school. They have to travel there by bus and while the children aren’t treated any differently, their parents and grandparents, who display the physical signs of having experienced the disease, are often stopped from boarding. This also prevents them from accessing their government grants because the bank is a bus ride away. This shows that the stigma around leprosy is extremely prevalent in rural communities which is why we are working hard to let people know that leprosy can be cured and isn’t something people should fear. All of the patients in Sudpada have completed multi-drug therapy and are no longer infectious - they just live with the disabilities, which for the elderly are severe. When they first showed symptoms of leprosy it was before there was a cure and so they ended up here hiding their symptoms away and waiting for the disease to take away their fingers, toes and eyesight.

The lack of safe transport to collect their disability grants from the bank, their only source of income, means the residents have no option but to turn to the streets. Like workers in a supermarket, residents in the colony operate a shift pattern, taking it in turns to wander the nearby roads begging for money. Residents say the earlier time slots are better because they can avoid the hot sunshine. “Those who can’t work go begging and they help those too disabled,” says the colony’s president, Kreushna. He also describes how the protective shoes we provide relieve some of the pain, make it safe for them to walk and give them back a bit of mobility which allows them to go out looking for food and money. “I’ve had my shoes for one month. They have made a huge difference”.

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These customised shoes cater for each individual’s ulcers and foot shape. They alleviate some of the pressure and allow that person to get around with ease, but this is just a small comfort in otherwise heart-breaking circumstances. This World Leprosy Day we want to encourage more people to talk about leprosy and highlight the injustice experienced by people forced to feel dirty and ashamed for contracting a disease that can easily be cured. By letting people know, we can help those affected to lead a normal life free from disease, prejudice and poverty.

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Nagama, Narsama and Miriam’s Story Nagama is 24 years old and lives in a leprosy colony. When we recently met Nagama, despite her poor surroundings she was cheery, just like any expectant mother who could not wait to meet her newborn baby. What was surprising about Nagama was the fact that she would have her baby in the colony and raise it here, but she doesn’t have leprosy. She has chosen to live in the colony. Her mother, Narsama, and grandmother, Miriam, have been affected by leprosy for many years. They are the ones living with a loss of vision and who have found themselves, as old women, struggling to get by and living in the colony. Nagama used to live with her husband until one day it got too much for her. She couldn’t bear the thought of her mother and grandmother fending for themselves so she left the comforts of her city home, her university education and the security of her husband and moved into the colony. Her husband has since moved away and remarried meaning that she’ll be raising this baby alone, but she says, “I’m just very happy to be able to take care of my family”. She genuinely seems to mean that. She laughs and smiles and seems so unperturbed by the fact that she’ll be bringing up a child in an extremely desolate environment and welcoming it

into the world already bathed in stigma because of the association to the colony. While our staff visit the colony often, providing ulcer care and protective shoes, it’s usually to help those affected by leprosy. In Nagama’s case though, we were amazed by her sacrifice and want to help her have a life beyond the colony. To do that, we’re funding her education and, once she’s ready, she’ll go back to completing her open university degree. When we asked if she was nervous about the birth she said no. When we ask about whether she wanted a boy or a girl, she simply said, “I really don’t mind.” A month later, Nagama gave birth to a healthy baby boy.

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LepraNews

World Leprosy Day World Leprosy Day takes place each year on the last Sunday in January - this year it will be on the 29th. The day aims to raise awareness of a disease many believe to be eliminated when in fact around 210,000 new cases are diagnosed each year. That’s not counting the estimated three million cases experts believe are undiagnosed. This day is also a great opportunity to let people know that leprosy is curable through a course of multi-drug therapy and contracting it no longer has to mean a life of isolation.

Early detection The fact that children are being diagnosed with leprosy shows that the disease is still being transmitted. Last year, in the state of Bihar in India, 17% of the new leprosy cases we detected were in children. Many of those already had a disability and our aim is to reduce that and to do so we need to detect cases at an earlier stage. That means continuing to educate remote and rural communities in places like India, Bangladesh and Mozambique on what the signs of the disease look like and where they can go for help.

Winter 2017

What you can do to help Leper

1) Don’t call me a ‘leper’

The term ‘leper’ was once used to describe a person affected by leprosy but, over the years, the word has become associated with anyone who is outcast, seen as a pariah or someone to be avoided. As Jayashree pointed out on page 3, it has an extremely negative connotation and only adds to the stigma that those affected by the disease face. We want to reduce this so we’re asking you, if you hear it being used in a chat with your friends or in a discussion at work to let that person know that leprosy still exists and ‘leper’ isn’t a correct term to use. You can even direct them to www.lepra.org.uk/leper-no-more for more information. That way, together, we can target the prejudice many affected by leprosy are forced to feel.

2) Fundraise

All the money you raise goes towards improving the lives of those affected by diseases like leprosy and there’s so many ways you can do it. There are book sales and bake sales, concerts and tea parties and you could even get your workplace or local organisation to ‘wear it loud for Lepra.’ Have everyone wear their most colourful outfit, bring in £1 and help put the fun in fundraising.

3) Tell a friend

If you’re reading this we know you are very aware that leprosy is still around today and what we are doing to tackle it, but do your friends, children or grandchildren? By simply passing on your knowledge and telling someone why you choose to support Lepra, you’ll be making a big difference.

4) Take the pledge

You can join our fight to #BeatLeprosy by pledging your support. Just visit: www.lepra.org.uk/beat-leprosy

This day was chosen by French humanitarian Raoul Follereau in 1953, as the third Sunday from Epiphany from the Catholic calendar.

5) Share it (literally)

To help us spread the word that leprosy does indeed exist and affects the lives of millions, give us a tweet, like or share on social media this World Leprosy Day using #WLD2017 or #WorldLeprosyDay Find out more at: www.lepra.org.uk/world-leprosy-day

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What you’ve been up to Ending 2016 with a bang, our supporters have been doing some truly inspirational things, all to raise money for those overseas affected by neglected diseases. We are extremely grateful and say here’s to another year of fabulous fundraising!

Pie-ling up the pounds for Lepra King Henry VIII School in Coventry showed that raising money can be fun, simple and a great excuse for getting your own back. The year 9 students put together a table of gooey treats for their ‘pie face day’ and asked pupils to pay to pummel the creamy cakes at their teachers. Raising over £1,160 through this and a street danceathon, they did a fantastic job and we’d like to give a special mention to the teachers who came away more than a little sticky!

Small but mighty With only 88 students, Hunter Hall School in Penrith did a great job raising over £1,300. They twirled, whirled and high kicked their way to the big figure by taking part in a sponsored Zumba workout.

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Leprosy We forget that

this disease is st ill a dreadful cu rse upon this ea Many suffer, an rth d un di ag no sed millions of th of little worth e poor are ignore d as if “Unclean, Unclean , Unclean” was th e ancient cry Whilst ringing a bell to repel the rare charitable helper This is a scene we no longer witn ess anywhere to day But do not let th is fool you into th inking leprosy ha s gone away Leprosy can ma im often resulti ng in loss of a fo ot or hand Facial disfigure ment rendering the land the victim a soc ial outcast throu ghout But leprosy is cu rable if only th e world would pri oritise the caus Medical resourc e es co uld be afforded if th underwent a pa e cost of arms ra use ce We can eradica te th e sc ourage and ea and mental strif se the sufferer e ’s physical So help to restore the victim’s soc ial worth and im prove his blighte MT/Aug ’16 d life

A Lepra poem

You may remember that last year we asked you to help us out by filling in a short survey. Those who did so were entered into a prize draw to win a signed copy of Victoria Hislop’s The Island. Ten lucky winners received the novel and one gentleman, Michael Treays, was so inspired by the story that he decided to put pen to paper and write us a poem. You can have a read above.

Playing for poverty Whipping out the woodwind and playing for poverty on the piano, Stoke on Trent music group, Canzonetta, hosted their second concert for Lepra. The event, which took place in September, was a resounding success with over 60 people in attendance. Concert go-ers had the pleasure of listening to the works of Ballard and Danzi all while helping us to change lives because Canzonetta donated the proceeds from their ticket sales.

LepraNews

Winter 2017

International Women’s Day As International Women’s Day, Wednesday 8th March, approaches we’re asking you to bring out the scones, lay on the tea and help us to change lives by hosting a tea party. Around this time grab some of your friends and charge a small fee for the tea and cake you provide. The proceeds can then go towards helping us reach more people in India, Bangladesh and Mozambique. For more tips, tricks and ideas on how to make your tea party a sweet success, visit www.lepra.org.uk. And don’t forget to let us know when and where you’ll be hosting yours so we can give you a little shout out on our social media channels.

Dates for the diary If you’ve been inspired by some of our dedicated supporters and want to get stuck in to helping us transform lives, then there are plenty of activities coming up that you can do. 23 April 2017 London Marathon Places for the marathon go pretty quickly but we’ve been lucky enough to secure some. If you’d like to lace up for Lepra and make one of those spaces yours, just get in touch

June 2017 Edinburgh to St Andrews Bike Ride

Leave something life-changing behind We know that family and friends are top of the list when you’re thinking about writing a will, but even the smallest of gifts can make a big difference to those living with a neglected disease. To receive your free guide about leaving a legacy to Lepra please call our Donor Support team on 01206 216700 or email us at donorsupport@lepra.org.uk.

Every year we have hundreds who take part in our bonnie bike ride and while registration isn’t open just yet, you can sign up to receive all our updates through our website.

30 July 2017 Prudential Ride London

Biking through the city of London on a sunny spring day sounds more like a fun day out than a fundraising activity so why not make the most of it and bring the whole family along for the Ride 100? You’ll be raising money for a good cause and making a difference with every pedal. If you’d like to find out more about any of our upcoming events email Holly at: HollyM@lepra.org.uk or visit: www.lepra.org.uk/events

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Lepra, 28 Middleborough, Colchester, CO1 1TG Tel. +44 (0)1206 216700 Fax +44 (0)1206 762151 lepra@lepra.org.uk www.lepra.org.uk Patron: Her Majesty The Queen Registered Charity Number 213251 (England and Wales) SCO39715 (Scotland)