Lepra News - Autumn 2016

Autumn 2016

LepraNews www.lepra.org.uk

In this issue Where are they now?

We revisit some of the people you’ve helped over the years.

Patron: Her Majesty The Queen

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LepraNews

Autumn 2016

Did you know…?

We have supported activities, led by The Leprosy Mission India and the Law Commission, to see India repeal the 1898 Indian Lepers Act and 29 other acts that discriminate against people affected by leprosy.

This particular act sanctioned the arrest and segregation of persons affected by leprosy into “leper asylums” but, as of earlier this year, the act no longer stands. This is a massive step towards breaking down the prejudice that those with leprosy face and we’re proud to have been a part of this!

In this issue Page 3

Proud to be a part of Lepra

Page 4

More on Mozambique

Page 5

Fundraising stories

Page 6 - 7

Where are they now?

Page 8

Our royal celebrations

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

Leprosy can cause nerve damage and disability as well as a loss of vision

A date for your diary: 29th November 2016 This year we will be taking part in #GivingTuesday and turning it into #GivingShoesday!

We want to highlight how something as simple as a pair of custom-made shoes can change the life of a person affected by leprosy or lymphatic filariasis (LF).

We’d love it if you could support us by tweeting us a photo of you wearing your favourite shoes on the day – along with #GivingShoesday.

@Lepra_HinA

If you’d like to do even more, we are asking people to donate £1 for every pair of shoes they own! Just £6 can pay for 2 pairs of shoes which will last for one year and give back independence to someone affected by leprosy or LF.

Instagram.com/lepra1

For more information, and to join in with all the fun, follow us on Twitter @Lepra_HinA

Facebook.com/LepraHealthinAction

Our front page features Kalpana, Rachna, Bhumisuta, Gulabsha, Bhola, Babu Mia, Aadil, Soudamini, Laxmipriya and Anowar

www.lepra.org.uk

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Proud to be a part of Lepra I’ve been a Lepra trustee for the past year and recently I took the opportunity to visit our projects in and around Hyderabad in India. This is a city in the Telangana state where my ancestry originates and so, I fortunately speak the local language, Telugu.

This was a great advantage to me as I could chat with people directly and hear their stories first hand – I was able to truly connect with the people we work with.

I visited our referral centre in Nallakunta, and met with young adults whose parents have been treated

by Lepra. These children were so grateful because, by helping their parents, we also helped them to enjoy their childhood and go to school.

In Mahaboobnagar, a small dry and dusty town quite far outside of Hyderabad, I saw how we’re providing treatment to really remote areas and educating people about leprosy at the same time so that we find cases earlier.

I met a gentleman who had travelled from his village by foot.

He had experienced leprosy and no longer had feeling on the soles of his feet. He used to be a labourer but, because of nerve damage, he couldn’t work and was now forced to beg to provide for his family. He told us how he had fallen asleep one night and his shoes had been stolen. To get a new pair of our protective footwear he’d walked over an hour to our centre with no shoes – this is dangerous for anyone, let alone someone who can’t feel their feet.

I was struck by how quickly our team worked to make him a new pair. They were so busy yet found the time to comfort him and directed him to the centre’s canteen where he could get food.

They said they’d make it happen the same day and they did. I was so inspired by their dedication and compassion.

Visiting our centres has left me a little more educated on how social care works in practice, how leprosy affects people and how we, as a charity, help people. I was moved by personal stories of hardship in life, stigma and disability. However, I was also so happy to hear stories of how lives had been transformed for the better and just how grateful people were to Lepra.

For this, I’d like to say a huge thank you as supporters and donors. I saw just what a difference our work makes to people’s lives and without your support it couldn’t be done. I am proud to be a part of Lepra and I hope you are too.

Sri Sharma Trustee of Lepra

Sri talks to our in-country staff on his latest visit to India

Thank you video Head over to our website to see video messages from some of the people whose lives you have helped to change.

Just visit: www.lepra.org.uk/thank-you-lepra

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LepraNews

Autumn 2016

Our progress in Mozambique Last year, we began a new project in the Zambezia province of Mozambique.

We did this in partnership with the Netherlands Leprosy Relief and, together, we’ve been tackling both leprosy and lymphatic filariasis (LF).

Zambezia is the second most populated province in the country with around four million people. Levels of leprosy cases and LF cases are high, but knowledge around the diseases and access to healthcare is low. We are working to change that with our three year project.

We are running awareness campaigns and training healthcare workers on what to look for when it comes to neglected diseases.

We want to teach those who are already living with a disability how to properly care for their affected body parts while bringing people together to learn a new skill that could help them to sustain an income.

All of these actions have already helped us to transform the lives of hundreds of children, women and men and so far, we have been able to: • perform surgeries for 419 men with hydrocele; this is when the testes become extremely inflamed as the result of LF • find 48 new cases of LF • diagnose 85 people with leprosy • provide 400 people with protective footwear • train 27 government staff in LF and leprosy detection as well as management of disability • train 180 community champions • familiarise 111 community leaders and 660 teachers with the symptoms of leprosy and LF and where they can go to access care

In this first year we’ve packed in a lot and already you can see the difference it is making. We couldn’t have done it without you. Your support has enabled us to raise more awareness of these forgotten diseases and, hopefully, this will mean that less people will have to live a life of pain and shame as a result of a neglected disease.

Our Mozambique Programmes Officer, Maartje Pronk, says the project has got off to a wonderful start.

A woman affected by leprosy collects water for her family

“We are on track to achieve our goals but still have a long way to go, especially when it comes to finding those cases of LF. Luckily, our staff are constantly learning and it’s great they that are able to exchange their experiences and skills with colleagues in India.”

Staff from our Mozambique project recently visited India to learn the techniques and practices being used to find new cases of leprosy and LF within our project areas there. This combined approach was completely new to them but, since returning to Mozambique, they have been able to implement that same methodology.

Later this year, our India staff will make the journey to Mozambique.

Thanks to you!

www.lepra.org.uk

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Fundraising stories Eat cake and change lives That’s what Ann Lloyd-Jones from Liverpool did when she hosted a life-changing tea for Lepra. Digging up her best recipes and calling upon her friends, Ann was able to raise an amazing £627.

She said: “I think many people believe that leprosy is a thing of the past and have no idea of the suffering it still causes so I wanted to promote Lepra’s work and the way it gives people new hope and a new life through fighting not just the disease but the prejudice and poverty it brings with it.”

If you’d like to bake up a storm like Ann, and raise money with your muffins, take a little look at: www.lepra.org.uk/life-changing-tea.

We have some tips, tricks and even a few recipes that will help make your afternoon tea a sweet success.

“He heard about the work of Lepra at school and wanted to do something to help people less fortunate than himself.”

Year 8 student, Joshua Backhouse’s mum

Riding coast to coast Another supporter who took to the roads is Year 8 student, Joshua Backhouse. He gave up three days of his school holidays to cycle the ‘Way of the Roses.’ This is a coast to coast bike ride from Morecambe to Bridlington that stretches a whopping 170 miles.

Joshua managed to raise £255.40 and we want to say a massive thank you. Without such courageous and generous supporters we wouldn’t be able to change so many lives!

Our annual Scottish cycle It’s been a few months since our supporters in Scotland hit the roads and braved the rain as part of the Edinburgh to St Andrews annual bike ride, but we’d like to say a big thankyou to those who gave up their Sunday morning for the cycle.

Getting muddy for money You may have watched plenty of videos on the ice bucket challenge and even taken the plunge yourself, but have you heard of the mud bucket challenge? This is something one of our youngest supporters decided to do to raise money for Lepra.

Charlotte Tudor, aged 12 from the Angmering School in West Sussex, swapped icy water for a bucket of sludge and had a family member pour it over her – frogs and all. She received £121 sponsorship which she donated to us and we couldn’t be more grateful! If you’d like to watch Charlotte’s challenge, visit www.lepra.org.uk/fundraise. We warn you though, it’s a little on the icky side!

The 68 mile ride, which has taken place since 1979, saw 508 cyclists ride between the two iconic cities. While the sun may not have been shining, that didn’t stop families, friends and racers from riding across the Forth Road Bridge. Our first speedy peddler crossed the finish line at 12.39pm having only set off at 8.45am.

Jack Irvine and Alistair Reid are annual supporters and said it was a great day.

“It is the best, better than all the rest. The ride is an institution and a happy day with a ‘friends and family feel’ to it – it’s so much better than other rides.”

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LepraNews

Autumn 2016

Where are they now?

Over the years we’ve told you many stories about children, women and men whose lives have been severely affected by diseases like leprosy. Often these are heart-breaking tales but many, thanks to you, go on to have happy endings and we want to share with you some of their stories...

efore Bhumisuta bnt treatme

Aadil in 2016er h with his mot

Aadil in 2014 Bhumisuta to

day

Bhumisuta

We diagnosed Bhumisuta with leprosy when she was 19. Now 24 years old, she’s cured and has had reconstructive surgery giving her full use of her hands again. Recently, we visited her and saw that Bhumisuta is now able to eat, cook and do housework - all things she struggled with before. When we had last spoken she had told us she had a fiancé but was worried his family would stop the marriage if they discovered her condition. Now she tells us the wedding is happening and we are invited!

Aadil

We diagnosed Aadil with leprosy when he was just three years old and told you his story in our Winter 2014 edition of Lepra News. At that time he was five years old and had just completed treatment, however his brother was thought to have contracted leprosy too. Today, both brothers are symptom free and Aadil, now eight, is attending school. He says his favourite subjects are Hindi, Urdu and Maths.

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Kalpana in 20

nd Laxmipriya after Soudamini a 14 surgery in 20

Kalpana in th has been abe store she le to open

Kalpana

Laxmipriya Soudamini in and 2016

Laxmipriya and Soudamini

Laxmipriya and Soudamini met when they were both undergoing physiotherapy and reconstructive surgery for their clawed hands in one of our clinics two years ago. The pair were unable to hold a pencil and were missing out on their education. Now, fully recovered, both can write and play games and have remained close friends. The two girls now visit schools with our staff to help educate other children about the symptoms of leprosy so they are aware of how important it is to seek treatment at an early stage.

We met Kalpana back in 2011 when she was in hospital recovering from a broken leg. She had been beaten by her husband because he suspected she had leprosy. We diagnosed Kalpana and put her on a course of multi-drug therapy. We also helped her to file for divorce and provided her with a loan to start her grocery store.

Five years later, her business has grown and she is able to provide for herself and her eight year old daughter Anshu, who is now thriving at school and says she wants to be a police officer when she is older. Kalpana now speaks about leprosy to people who visit her shop, helping us to spread the message that the disease is curable and should not be feared.

www.lepra.org.uk

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Rachna

When Rachna started to find patches on her body, her husband forced her to leave the family home. In 2010, we diagnosed Rachna with leprosy and helped her access treatment.

In 2012, once cured, she became a community ambassador and is now a Lepra employee helping others affected by leprosy. She leads health education camps, teaches self-care and works closely with local leprosy colonies to prevent disability. In 2015, Rachna joined the International Federation of Anti-Leprosy Associations (ILEP) advisory panel giving a voice to those affected by the disease on the global stage.

“We need to make people aware of this disease and the fact that if you take the treatment you can be cured. If you have taken the treatment you are the same as other people, you can have a normal life, so there should be no discrimination,” she says.

Rachna in 20

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Bhola in 2012

Bhola

Bhola today,

aged 17

Bhola was just three when he contracted leprosy and by the time he visited us, leprosy had already affected both his hands and his left foot. Now 17, he continues to visit our Munger referral centre in India for footwear, self-care demonstrations and physiotherapy. He owns a mobile shop which helps him to support his family and although he’d benefit from surgery to his foot, he cannot be away from home while he looks after seven members of his family. We are working with him to find a way that allows him to have the surgery locally.

at 16, speaking Rachna in 20wareness event a health a

Anower Hossa

in

Babu Mia

Babu Mia lives in a small village in the Bogra district of Bangladesh. We last reported that at age 11 he had just been diagnosed Babu Mia with leprosy and was about to start treatment. We also discovered that other members of the family had contracted leprosy. A few years on, he and his family are leprosy-free and have resumed their normal family life.

Anowar Hossain

When we told you Anowar’s story last autumn, he was learning to live with his clawed hands and the loss of sensation in his feet as a result of leprosy. Despite the disabilities, Anowar had managed to open a shop with a small loan from his Lepra self-help group. He had then used his profits to buy 35 ducks and since then he’s added to his brood and is now the proud owner of two goats. He is also ulcer free and we’re working with him to undergo surgery to restore some of the movement in his right eye.

Gulabsha

day

Gulabsha a

Gulabsha to ged 13

When Gulabsha met our colleagues at the Munger referral centre in India three years ago she couldn’t hold a pencil and had dropped out of school. We helped her access treatment and physiotherapy so that she was able to return to her studies. She says: “Now I am able to write, my life has changed completely.”

Gulabsha, now 16, has completed secondary education and plans to study for a degree in engineering.

Our royal celebrations From April right through to June, Her Majesty’s 90th birthday celebrations were in full swing and, with The Queen as our patron, it was only right that we joined in.

We held a few office tea parties, ran a bunting competition* and even attended The Patron’s Lunch. This was an event to mark The Queen’s patronage of over 600 organisations and was said to be the UK’s biggest ever street party with over 10,000 people lining The Mall. We were very excited to be there and even caught a glimpse of The Queen herself!

Of course, we couldn’t go to the party without a gift so we put together a book looking at the history of Lepra and our royal patronage. While we couldn’t take it to the event itself, we’ve got it wrapped and ready to present it to a member of the royal family very soon. * The winning bunting designs are featured above - well done to Daisy Scott, Alice Jones and Zara Sabri, and thank you to all who entered!

Get involved

Easy Fundraising

If you’re about to make an online purchase and access the retailer through Easy Fundraising they’ll give you a cash reward for using their site. You then have the option to turn that reward into a life-changing donation for Lepra.

Whether you’re whipping up a trifle or running a race, there are so many ways you can get involved and help us in our mission Savoo Swap your Yahoo or Google to Savoo Search and every time you to improve the lives of those do an online search, Savoo will donate a penny to Lepra. If you’re looking to do some online shopping and want to get a great deal, affected by neglected diseases.

Savoo also has thousands of voucher codes to help you save money.

Some things you can even do ChariTable Bookings without leaving your sofa…

ChariTable Bookings is an app which allows you to raise money for Lepra simply by booking a table at one of the thousands of If your guilty pleasure is a little online shopping, restaurants listed. For every person in your party, a pound will go to Lepra. you can eradicate that guilt by signing up for Give as You Live. This is a website which Leave a gift in your will enables you to purchase your items while a We know that looking after your family is a priority, but your percentage of the money goes to a charity generosity can last long after you’re gone if you leave a legacy. of your choice. If you opt for Lepra that will Even a small gift can make a huge difference, and transform the mean that every time you click and buy on lives of those affected by disease, poverty and prejudice. For more sites like Asda or Amazon, you’ll be helping to information, contact our Donor Support team on 01206 216700 change lives – that’s an excuse for more online or email donorsupport@lepra.org.uk. shopping if ever we heard one!

Give as You Live

Facebook.com/LEPRAHealthinAction @Lepra_HinA

Lepra, 28 Middleborough, Colchester, CO1 1TG Tel. +44 (0)1206216700 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)