LepraNewsWinter 2015

In this issue

Lepra at the forefront of the fight against leprosy

Our new water, sanitation and hygiene projects

www.lepra.org.uk

Patron: Her Majesty The Queen

2

In this issuePage 3 Lepra at the forefront of the fight against leprosy

Page 4 Babu’s happy ending started with early diagnosis

Page 5 Events and fundraising

Page 6 Sunita shares her story

Page 7 Water, sanitation and hygiene

Page 8 Restarting lives stopped by leprosy

A woman affected by leprosy awaits reconstructive surgery

Our front cover features Gulabsha. Read more about her on the back cover. We update our Facebook page and Twitter tweets daily so please like and follow us!

Facebook: facebook.com/LEPRAHealthinAction

Twitter: @Lepra_HinA

We’re also on Instagram – instagram.com/lepra1

Ninety-one years ago, we began our journey to beat leprosy as the British Empire Leprosy Relief Association. Today, as Lepra, we are still at the forefront of the fight against this disease and the poverty and prejudice it causes.

Despite being curable for nearly 70 years, nearly 216,000 people were diagnosed with leprosy last year and there are up to three million people permanently disabled by the disease.

In partnership with anti-leprosy charities around the world, we are working harder than ever to stop the transmission, prevent disability and break the barriers that people with leprosy face. You can help us by joining our “Beat Leprosy” campaign and supporting our projects which will help to reduce the leprosy burden in Bangladesh and India.

With you by our side, we are taking our fight against leprosy to the highest level.

Ensuring the voices of people with leprosy are heard

Rachana, a Lepra community health worker from India, recently gave a moving presentation about her experience of leprosy and her passion for helping others at a key global meeting about Neglected Tropical Diseases.

Putting leprosy back on the UK political agenda

We are bringing leprosy to the attention of our own government and pushing hard for action via the UK Coalition against Neglected Tropical Diseases.

A new move in the fight against leprosy

We look forward to celebrating the 15th anniversary of our work in Bangladesh in March this year. The history of leprosy may be long, but together we are moving ever closer to the end of our journey: the day we beat leprosy for good. I hope to give you exciting news soon about our re-engagement in Africa and a big, new funded project.

Thank you for your continued support for the millions of people who need our help.

Sarah Nancollas Chief Executive

3

Join us on Twitter @Lepra_HinA and help #beatleprosy

@VicHislop I’m not alone in pledging to #BeatLeprosy. Over 500 others have joined. Will you?

@Givetoview Make a fundraising video to support #GivingTuesday partners @Lepra_HinA with givetoview.com

@StWilfridSchool Our Year 7 students did a workout this morning to raise money for Lepra

@julietdmurphy Eldest child has pledged to give up the iPod, iPad, computer for the whole weekend to support @Lepra_HinA #social #consciousness

@malverncollege Last week’s Zumba workout for @Lepra_HinA raised an amazing £3,600. Nice moves!

@GSChurchSM5 Emily Hudson did a great job selling cakes for the wonderful @Lepra_HinA this morning #beatleprosy

@WHSG7 Who will be crowned this year’s charity cup winners? This year’s chosen charity is @Lepra_HinA

From our Twitter community

Lepra at the forefront of the fight against leprosy

Babu Mia lives in a small village in the Bogra district of Bangladesh. Babu is only 11 years old but has just been diagnosed with leprosy. No one knows how Babu became infected but he has passed leprosy on to his parents and three brothers too.

Thankfully, this is a success story. A village doctor, who had been trained by our local team to recognise the early symptoms of leprosy, spotted light patches on Babu’s skin. The doctor referred Babu and his family for diagnosis with our team – a simple sensitivity test for numbness in the hands or arms confirmed a diagnosis of leprosy. They were all then started on multi-drug therapy. Thanks to one Lepra-trained doctor, Babu, his parents and three brothers have been saved from a future blighted by leprosy.

Help us take the crucial first step to Beat Leprosy

Early detection and diagnosis is the first step in helping more families like Babu’s beat leprosy – and you can help us to extend our services. We need your help to raise funds for three vital programmes: contact tracing, increased health education and additional services at our leprosy referral centres.

Contact tracing tries to find all of the people around someone with leprosy who are at high risk of infection, such as their close family and friends. We then examine these people to see if they are infected too. Recently in Bangladesh, this approach found eight times as many new cases of leprosy.

However, contact tracing is currently limited to our referral centres. We need your help to fund four new mobile teams for the next two years. This pilot programme will cost £43,200 but, with these mobile teams on the ground visiting remote communities, we will be able to reach even more people and increase the rate of early detection.

Help us stop undiagnosed leprosy devastating lives

Despite leprosy being entirely curable through a simple course of medication, four million people are disabled as a result of late diagnosis and delayed treatment. Undetected leprosy may result in blindness and other physical disability leading to loss of income and social isolation. The long incubation period (two to six years on average, but can be up to 20) means that unless we act on early detection, untreated cases may fuel a resurgence in leprosy cases.

By acting together, we can fund more vital early detection and diagnosis services and continue the fight to beat leprosy.

4

£15 could screen a whole family like Babu’s for leprosy

Babu’s happy ending started with early diagnosis

Above: Babu Mia, aged 11, diagnosed with leprosy Right: Babu with his family

5

Victoria serves up a fascinating feast in Belfast

Victoria Hislop, our leprosy ambassador, is always a great supporter. At a literary lunch at La Mon Hotel in Castlereagh, nearly 300 guests were fascinated by her talk about writing The Island and her new book The Sunrise. A big thank you to Victoria and also to the Belfast Lepra committee who organised the event and raised more than £4,000.

#GivingTuesday a great success

On 2nd December, we were partners in #GivingTuesday. What a fantastic opportunity this was to raise the profile of Lepra, mainly online. Twenty businesses supported us by donating a percentage of food sales on the day, auctions and raffles, a quiz and even a swear box! Along with the publicity, we raised more than £700. Giving Tuesday, celebrated for the first time in the UK in 2014, follows Black Friday and Cyber Monday. It’s a “global day of giving” so we look forward to an even bigger Tuesday in 2015.

Travel, have fun and raise funds!We are excited about our new fundraising challenge events. A Cretan Challenge trek

from 27th September to 4th October 2015 will include a visit to Spinalonga, a former leprosy colony featured in Victoria Hislop’s novel The Island. Our new India bike ride is from 18th to 29th November 2015. Check our website lepra.org.uk for more details.

Contact Lizzie Dearling about any of our challenge events on 01206 216700 or email events@lepra.org.uk

Archie’s 100 climbs

So many young people support us by raising funds in all sorts of interesting ways. Archie Griffiths is a 12-year-old pupil at Chipping Campden High School. He was inspired to raise money for us after a presentation at the school.

In November last year, he planned to climb 1/4 mile at the Evesham Leisure Centre climbing wall. This involved climbing and abseiling the wall 50 times in two hours – quite a challenge. He actually achieved 100 times – half a mile! He set up a fundraising page on our website and raised £527. Congratulations Archie and a big thank you.

Students wake up to Lepra

For the past 20 years sixth form students at Fulston Manor School in Sittingbourne, Kent have run a Stayawake night between the hours of 7.00pm and 7.00am in aid of Lepra. Last year, in November, was no different with 130 students and 17 staff volunteering their time. The sixth form committee organised events designed to keep everyone awake. These included a five-a-side football tournament, board games, a mini rave, karaoke and some amazing face painting creations.

The event raised £3,500 bringing the total donations to us to nearly £50,000 over the last 20 years. “Thank you” seems inadequate. You are amazing Fulston Manor sixth formers!

Discover more fundraising for Lepra at lepra.org.uk/fundraise

On behalf of all the people in Bihar and especially those who have benefitted from your work on leprosy and lymphatic filariasis (LF), I would like to express my heartfelt gratitude to Lepra and all your supporters.

I have had LF for the last 23 years. In the earlier days, I had no knowledge of the disease. I suffered high fevers, unbearable pain and swelling in my leg and sought treatment from many local doctors, but there was no improvement in my condition.

Then, my husband took me to one of India’s prestigious hospitals. We spent 46 days there and for the first time I learnt that I had LF. My treatment continued in the hospital and my husband stayed at a local lodge. We spent all our savings there and my husband even had to borrow to sustain us upon our return.

I was very sad and worried about my diagnosis because I knew LF is not curable. The hospital treatment did not give me any relief and I increasingly became depressed with the onslaught of disability due to the swelling in my leg. I would suffer with severe bouts of fever and intense pain. Eventually, I was unable to walk or carry out my daily household chores and found it difficult even to leave my house or attend to my duties.

I started avoiding friends and relatives as I felt rejected and hated by them all. I used to feel too ashamed of myself to attend a wedding or any social event. As a result of this disease I have suffered so many problems and

difficulties that I am unable to put it all down in words.

In 2008, as part of my job as a government health worker I came into contact with Lepra and immensely benefitted from their services. They taught me a daily routine of self-care practices that include cleaning and washing my leg, massaging, exercising and elevating it at least twice a day. With such simple practices, the swelling in my leg, fever episodes and pain have reduced substantially. However, these practices are effective only when they are carried out each and every day. They have now become part of my daily lifestyle and that is why I am able to keep myself healthy and mobile.

As a health worker I know how little the state government does. Apart from distributing some tablets once a year under their Mass Drug Administration programme, the government does not provide any other care.

There is a huge knowledge gap in the communities on the causes and symptoms of this disease. Like me, there are many people in my area who are suffering with this condition. Don’t they all have an equal right to health? Wouldn’t you agree with me that they have a right to live in their families and not be shunned by them? That they should be treated with respect and dignity?

Today, I appeal to all of you to come forward to help those disabled due to LF, to spread the word and raise awareness on the disease so that people do not suffer prejudice and neglect any more and are able to lead ‘normal’ lives.

Sunita, an auxiliary nurse and midwife at Bhagalpur Primary Health Centre in Bihar, India, shares her story

Sunita’s story

6

Sunita Kumari

Water, sanitation and hygiene

Samida Khatoon drawing water

A lack of water, limited knowledge of sanitation and being unable to afford basic things like soap put people with leprosy at greater risk of secondary infections and permanent disability.

India In public health centres in Telangana and Andhra Pradesh states, we are working with WaterAid on a new water, sanitation and hygiene (WASH) project until March 2017.

The aims of the programme are to train local people in skills which they can pass on to local communities, and ensure the water and sanitation rights of everyone. We also want to improve these vital community healthcare facilities.

The programme should lead to a reduction in water-borne disease through improved water supply, sanitation and hygiene practices in at least 50% of the healthcare centres.

“Swachh Bharat Mission”

In October 2014, the Indian government announced a “Swachh Bharat Mission” (Clean India), urging everyone to devote at least two hours each week towards cleanliness. WaterAid is a

“knowledge partner” for this campaign; we look forward to working with them and using our combined expertise to achieve the best result.

BangladeshOur community-based project Learning to Live with Dignity is based in the Bogra district of Bangladesh. After talking with the local community, they told us about the issues they face in their daily lives such as access to safe drinking water, poor sanitation and lack of hygiene. The World Health Organization estimates that only 40% of people in Bangladesh have proper sanitation and more than 70% of rural households have no latrine or it is unhygienic.

We are delighted that the States of Guernsey Overseas Aid Commission has funded our new one-year WASH project which will start early in 2015. We will reach 6,000 people directly and 40,000 indirectly with safe water, improved

sanitation and improved hygienic practices.

We will install or upgrade toilets and tube water wells. We will also recruit and train local volunteers to teach people good hygiene and encourage them to change their behaviour. A deworming programme will help to prevent and control water-borne parasitic health conditions, and we will provide anti-scabies medicines and rehydration salts to treat diarrhoea. With both of these projects, we aim to bring safe water, sanitation and hygiene to families living in these poor communities.

£20 could train another local volunteer

7

Gulabsha is 13 years old. She has six brothers and sisters. Her father works at a tobacco factory and earns 150 to 200 rupees a day (£1.50 to £2) to support the whole family of nine people.

Our health education van and staff visited her village and she heard about the first signs of leprosy. She had already noticed a raised patch of skin on her left forearm which was also numb. Her parents were very anxious and took her to a government district hospital where she was then referred to Lepra. Sensory testing confirmed that she had leprosy; she started on a six-month course of multi-drug treatment immediately.

The numbness wasn’t the only problem though. She couldn’t even hold a pen and she dropped out of school, staying away for almost one year. She didn’t leave the house and was very worried about whether she might ever be able to continue her studies. A counsellor at our leprosy centre met Gulabsha several times and she became more confident.

Gulabsha is afraid of the prejudice she may experience from the people in her community. Outside her family, she has not told anyone about the disease. Her parents have also kept the diagnosis a secret because they do not want to ruin the marriage prospects for their daughter.

Gulabsha has returned to school but is one year behind in her studies. Her favourite subject is Hindi and she loves reading. She plans to be an engineer but for the moment is happy to be well again.

Whilst both men and women are negatively affected by leprosy in terms of their family and marital lives, women and girls suffer more isolation and rejection. Psychologically, women are more vulnerable because they are often deprived of personal contact with others. Gulabsha was lucky because she had support from her parents, but this is not always the case. Some parents keep their leprosy-affected daughters hidden because of the stigma which could deter offers of marriage.

Restarting lives stopped by leprosy

Gulabsha Elham

Here’s a great way to help more people like GulabshaStarters, mains, side dishes and sweet treats: Food with Love is packed with 30 tastebud tickling recipes from famous Asian chefs and supporters around the world. Plus, by purchasing Food with Love you’ll be raising money to help millions of people affected by disease, poverty and prejudice in India and Bangladesh.

Get your copy of Food with Love today – just £5To order, visit lepra.org.uk/shop/food-with-love or call 01206 216 700

Facebook.com/LEPRAHealthinAction @Lepra_HinA

Lepra, 28 Middlebrough, Colchester, Essex C01 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) SC039715 (Scotland)

200

7/D

/A