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Winter 2019

LepraNews lepra.org.uk

In this issue Overcoming the Odds World Leprosy Day 2019


Patron: Her Majesty The Queen



Winter 2019

£1 from you, we get two! An update Our £1 from you, we get two! appeal has been a great success with £123,732 raised thanks to your generous donations and pledge funding, which doubled the first £50,000 in donations we received.

The money you raised will provide support to people affected by leprosy and help us continue vital research into leprosy diagnosis, transmission and treatment. Thank you!

Stuart Miles becomes an ambassador for Lepra

Lepra teams with The Science Museum

We are delighted to announce that following on from being one of the spokespeople for our ‘£1 from you, we get two!’ appeal, Stuart Miles has joined Lepra as an Ambassador. As part of the role, Stuart will promote awareness of our work to find, treat and support people affected by leprosy and share our message that we will beat leprosy together. You can find out more about Stuart and his work around men’s health at www.milesyounger.com

We are excited that Lepra CEO, Geoff Prescott and Lepra Society’s CEO, Ashim Chowla, will both be part of Medicine Galleries, a new exhibition opening in October 2019 at The Science Museum in London that shows how lives have been transformed by 400 years of medicine and health.

In this issue Page 3

Overcoming the Odds

Page 4

Partnerships – beating leprosy together!

Page 5

World Leprosy Day 2019

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Fundraising stories

Page 8

Rokdiya’s story

Join in the conversation on social media:





Pictured on our front cover is our new Lepra Ambassador Stuart Miles and Akanksha, who was treated at the Blue Peter Health & Research Centre.

Find out more at https://www. sciencemuseum.org.uk/ see-and-do/medicinegalleries

Lepra Society awarded a Nathan’s Learning Forum Leadership Award On Sunday 26th August 2018, Lepra Society was presented this prestigious award for its role in combatting leprosy in India. Chairman of the Lepra Society, Dr V. Rukmini Rao accepted the award from Mr Prabbhakar, Member of the Legislative Council, at the Apollo Hospital in Hyderabad.



Overcoming the odds Hydrocele is a symptom often linked to lymphatic filariasis (LF), affecting men. Swelling occurs in the scrotum which causes discomfort, pain and can affect self-image. Rajni Kant Singh, our Projects Co-ordinator in Bihar, India explains his experience with Hydrocele and how Lepra is working to help men affected. In 2000, my scrotum started swelling. I ignored it and over time it became difficult even to wear regular trousers. I started to research and suspected that this could be hydrocele but was scared to visit a doctor as this is a very personal and embarrassing problem and can lead to discrimination. I found that the problem was affecting my marriage, that I couldn’t ride my scooter or at times even walk to the bathroom. I would have to spend up to 10 days a month in bed, losing wages and feeling a great sense of shame, not only that I had received this affliction, but that others could see it unless I changed how I dressed. This badly affected my mental health and I even contemplated suicide. While LF does not have a cure, hydrocele symptoms can be resolved with a simple surgery. However fears about cost and taking time off work, along with the embarrassment can mean men suffer in silence rather than seek help. After five years, I was finally convinced to seek treatment by a family member. The doctor I saw laughed and asked why I had waited so long as the surgery took less than 15 minutes and after a couple of weeks of recovery I never looked back. I was lucky in that I was able to pay the R5000 (around £53) for the surgery, although the five years of missed wages were around four times that much. Many others are not in the position to pay this and so go on living with the pain and embarrassment, damaging their mental health and family relationships.

Since the surgery I have been able to progress and now I am proud to be Lepra’s State Coordinator for Bihar. I now help other men in my situation to know that there are options for them, that they need not suffer in silence, while also working to tackle leprosy. I am proud that Lepra has teamed up with the Vodafone Foundation on an exciting new project called Mobilising Men’s Health. The project is helping men to overcome hydrocele by funding surgery and offering a bursary to cover lost wages during their recovery. LF and hydrocele do not qualify as disabilities in much of India. A big part of our work is to lobby governments at the state and national level to change this, as the effects of LF and hydrocele can be debilitating. Your support will allow us to help more people affected by these diseases get the support and help they need, so that they too can overcome the odds.

Rajni Kant Singh - Projects Co-ordinator for Bihar



Winter 2019

World Leprosy Day 2019 World Leprosy Day 2019 takes place on 27th of January and this year we are calling for governments to provide more funding into researching leprosy and treatments, along with fighting the prejudice that often stops people from seeking treatment. People affected by leprosy often face real prejudice and discrimination. People may not understand the facts about leprosy or see it as a curse or shameful. This is despite leprosy being curable and no longer infectious after just one dose of Multi-Drug Therapy. In some cases, prejudice can mean that people are excluded from their family, school, or job or even divorced due to their diagnosis. In addition, using the

words leprosy and leper where they don’t belong can reinforce negative stereotypes and reinforce the prejudice and discrimination people face. You can help spread this important message by making a personal pledge to not use leprosy out of context or use the word leper. Of course, we would love you to share your pledge via social media and to your friends to help raise awareness and encourage them to take part.

The media also has a part to play by not using leprosy in controversial contexts such as when discussing political matters or using the term “social leper”. People affected by leprosy have told us that these words and phrases are not only hurtful but reinforce the discrimination they face. World Leprosy Day holds extra significance this year as our 95th anniversary is just four days later. To acknowledge this, we are launching our ‘Leprosy Matters’ podcast, which will offer information, insight and interviews with important figures in the fight against leprosy, and special guests who are joining the fight against this cruel disease. The podcast will be available on at www.lepra.org.uk and https:// www.youtube.com/LepraOrgUk As part of our 95th year, we are introducing 95 Voices, a series of short films made by people who have been affected by leprosy or who have been touched by Lepra’s work. A selection will be made available throughout the year via our website at www. lepra.org.uk and https://www. youtube.com/LepraOrgUk

Neru, age 8, suffered from prejudice at school after being diagnosed with leprosy. She underwent reconstructive surgery and after a visit to her school to explain her story - she is now back at school and wants to become a teacher.


A legacy of hope

Leaving a gift in your will can help change the lives of others Deciding to leave a legacy is a very important decision. If like us, you believe that we will one day see the world free from leprosy then you can help us to make this happen. By leaving a legacy in your will to Lepra, you can help fund vital projects that support the 7

can pay for a leprosy contact survey consultation for a family, screening up to 50 people including, family members, neighbours and friends.

million people affected by leprosy, offering education to recognise the symptoms, treatment to improve symptoms or cure them and support to help them overcome can train five prejudice and discrimination. No community health one should be defined by their workers so they are able condition, and a gift to Lepra In to detect signs of leprosy your will can help to permanently and lymphatic filariasis. change lives.


Request an information booklet - If you would like to find out more about legacies, or request a copy of our legacy booklet, please visit our website www.lepra.org.uk/gift-in-your-will. Or you can contact our Donor Support team by telephone 01206 216700 or email: donorsupport@lepra.org.uk.



Partnerships – beating leprosy together!

Cantata Dramatica present Voices for Change – A concert in aid of Lepra We are proud to be partnering with Cantata Dramatic on Voices for Change, a unique musical event on 30th January. Taking place at the iconic St Stephen Walbrook church in the City of London. The event offers the world premiere of “Treasures of Byzantium”, a collection of newly commissioned music and dance to bring to life four evocative Greek poems of the Byzantine era.

Festival and former Controller of BBC Radio 3 will be guest speaker for the evening. This is a wonderful chance to experience new, choral music in an iconic setting and support Lepra and World Leprosy Day. Tickets cost £20 and are available by visiting https://bit.ly/2PoP9xk or by calling 01206 216700.

Roger Wright, CEO of Snape Maltings, the Aldeburgh Music

Pavers Shoes - bringing footwear to those in need over 5,000 people affected by leprosy and lymphatic filariasis (LF).

Roger Wright, CEO of Snape Maltings

We are happy to announce that Nayan Patel, Mehmood Khan and Natalia Bucci have joined Lepra’s board of trustees, bringing valuable and unique experience and skills that will strengthen our governance for the future.

A second van will cover the Telangana state working with 20 leprosy colonies across 10 districts.

Pavers Shoes are proud sponsors of our Shoe Van which travels across the Indian state of Bihar delivering custom-made footwear. Since 2015 the van has helped

We are delighted that Pavers Shoes CEO, Stuart Paver has agreed to become a Lepra Ambassador. As part of his role he will work with us to raise our profile and share the excellent work the Shoe Van project undertakes.

Find out more about Pavers Shoes at http://www.pavers.co.uk

Life In The Fast Lane

Jamie Chadwick joins Minerva Trust’s Female Focus event The Minerva Trust kindly invited us to be part of their Female Focus Networking evening in November. Vaishali Shah of Minerva Trust hosted the evening at the prestigious Royal Overseas League Club in Mayfair. Business women from around the capital attended, and we were able to arrange a special guest speaker. Flying in from a successful weekend racing in Dubai was record breaking driver Jamie Chadwick, who spoke candidly about her motivations and what it was like to be the first ever female to win a Formula 3 race. This was followed by guests learning about Lepra’s work to beat leprosy

from Helen Rackham, Director of Angela Stafford, Olivia Egan and Fundraising and Communications, Phoebe Nicholson.

Angela Stafford, Vaishali Shah, Jamie Chadwick and Helen Rackham at Minerva Trusts Female Focus event.



Winter 2019

Fundraising stories Socks and Sandals Day 2019

Challenge yourself to help beat leprosy

We’re proud to be launching our first official Socks and Sandals Day in 2019. On this day we’ll be encouraging as many people as possible to stand with people affected by leprosy and lymphatic filariasis (LF) by wearing their most colourful socks and sandals and making a donation to Lepra. You can host a day at your office, school, with your friends or even your local pub. This is a fun way to raise awareness while making a real difference! To find out more visit our website: https://www.lepra.org.uk/ socks-and-sandals If you would like to plan an event, please contact us on 01206 216700 and we can help!

Generous Co-op customers help to beat leprosy A big thank you to The Co-op and its customers in the Medway area who have been donating via check-out collection pots over the last few months and have helped raise over £1,017 across the 19 stores. Thanks also to Co-op stores around Moray that raised a further £223!

The season for challenge events is fast approaching. Could you or your business join Team Lepra? Marathons

Team Lepra’s 12 marathon runners are training hard for the London Marathon in April, while Melanie Carriedo, who ran for us last year will be offering training and motivational tips over the coming weeks at www.lepra.org.uk Meanwhile, our own James Byfield is undertaking a series of marathons including Paris, Brescia and the Lumberjack Challenge in Ottowa, Canada. You can follow James’ progress via his blog at www.lepra.org.uk or get involved by taking on your own challenge!

Ride 100

Ride 100 will see around 25,000 amateur cyclists take on a cycling challenge based on the route of the London 2012 Olympic Road Cycling Races. After cycling through the Surrey Hills enjoy a spectacular finish on The Mall in Central London. There are plenty of challenge events to get involved in from 5ks to skydives, and many many more. Contact Olivia on 01206 216700 or visit www.lepra.org.uk/events for more information on how you can be part of Team Lepra and challenge yourself to help beat leprosy.

Last year Imran took part in Ride 100 for Lepra, having overcome leprosy himself! Why not join Team Lepra and help us beat leprosy on 4th August 2019?



Heritage Open Day 2018

A Hole in one for Lepra from Barclays October 2018 was an exciting month in Essex. Barclays organised a golf day for Lepra at Benton Hall in Witham. In the spirit of our ‘£1 from you, we get two!’ appeal, Barclays doubled everything raised, resulting in a wonderful total of £3,800!

Let’s get quizzical Pubs quizzes are a great way to have fun and raise funds for Lepra. In October quizzes raised an amazing total of £550! Are you a quiz-goer that would like to hold a fundraiser? Or maybe you have a venue to host a quiz. We’d love to hear from you on 01206 216700.

A Feast for Lepra November saw a unique event come to Colchester, allowing over 80 guests to go back in time, enjoy great food and support Lepra. The Medieval Feast, was held at Colchester Arts Centre and saw locallythemed dishes including oysters, fowl and Colchester pudding, all served on an edible bread plate!

We opened our leprosy museum for the first time as part of The National Trust’s Heritage Open Days this September. We were joined by The Big Sing Choir, who performed in our foyer and over 50 visitors who toured the museum, our special Blue Peter exhibit, saw historical films, along with footage of Stuart Miles’ trip to India. We would like to thank Brunch and our team for providing us with lovely cakes on the day and we look forward to next year’s event.

First class – Maggie Mae and friends bake a treat for Lepra After a visit from our local Community Fundraiser Beth, Maggie-Mae’s PSHE class at Haysfield School, Bath raised funds for Lepra with a bake sale. Their brilliant efforts saw them raise £108.57 and we would like to thank everyone who helped, supported and bought cakes on the day, as well as Maggie Mae for contacting us for a fundraising pack. You can get a pack for your own event by contacting us on 01206 216700.

Medieval themed drinks and entertainment from the Colchester Waits and a special singing appearance by Colchester MP Will Quince helped round the night off. The evening was organised by Don Quinn of Food & Drink Festivals UK. Thank you to everyone who took part in this wonderful evening and you can find out more about other events at https://www. foodanddrinkfestivalsuk.co.uk

Meldrum Academy slides into action Thank you to the wonderful students of Meldrum Academy in Oldmeldrum, Scotland who raised over £2,300 for Lepra. Pupils took part in a wide range of activities including an inter-house slide-athon, bake sales, and even giving up Nutella for a week!



Rokdiya’s story Rokdiya lives in Bihar and lived with symptoms of leprosy for over a year before she was discovered as part of our active case finding. In 2016, Lepra applied a hugely effective new approach to active case finding. In Mungar, in the state of Bihar, data was collected relating to all leprosy cases released from treatment in the last five years. A contact survey was undertaken, examining all the household members of these cases and a focal survey with people living in the twenty houses surrounding these households. Within six months, the project found

321 new cases of leprosy, an enormous 300% more new cases in one year. Of these new cases: • 37% were children • 47% were women • 69% belonged to Scheduled Castes and Tribes. Our active case finding approach is therefore particularly efficient at finding vulnerable groups often missed by government campaigns. Lepra referred the new people diagnosed with leprosy for treatment and specialised medical care. Rokdiya’s father had previously been affected by leprosy and had lost his right eye as a result. Unfortunately her parents did not recognise the small skin lesions and patches she had developed as leprosy and did not seek treatment. After finally being diagnosed by our team, Rokdiya felt that she was unable to go to school for three months while she underwent treatment with multi drug therapy (MDT) as she didn’t want people to know about her condition. She became isolated from her friends and teachers. Once she had recovered, she was able to return to school and is now working towards her dream of becoming a doctor. She says “I want to be a doctor and to raise awareness of leprosy so nobody lives with disability…”

Winter 2019

Your Present, Their Future As we approach our 95th birthday, we’re launching a new way you can help our work, by donating your birthday or special event to Lepra in 2019. Inspired by a wonderful supporter who recently donated £800 to celebrate his 80th birthday, “Your Present, Their Future” will be a key campaign during our 95th year. Donating a special day is quickly becoming one of the most popular ways to support your chosen charity. Getting involved via Facebook is easy. Select Lepra as the charity to donate your special event to. This also lets your friends and family know that you are donating your birthday to us and they can then donate directly from your Facebook page instead of buying a present. Alternatively they can visit www.lepra.org.uk and make a donation if they prefer. Even if your birthday has already passed, you can donate for any other special occasion such as a wedding, anniversary or retirement to help the 7 million people affected by leprosy. To find out more, visit http://www. lepra.org.uk/your-present-theirfuture/ or contact us on 01206 216700.

This year why not let Your Present become Their Future?

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

Profile for Lepra

Lepra News Winter 2019  

The first Lepra News of 2019 reveals our plans for our 95th anniversary and how supporters such as you can get involved!

Lepra News Winter 2019  

The first Lepra News of 2019 reveals our plans for our 95th anniversary and how supporters such as you can get involved!

Profile for lepra