Spring 2018
LepraNews lepra.org.uk
In this issue Going against the grain: our new project in Mozambique
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Patron: Her Majesty The Queen
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LepraNews
Global support on World Leprosy Day Sunday 28th January saw rallies, walks and even an event at the House of Lords to raise awareness of leprosy across the world. In the Dinajpur district of Bangladesh we also carried out a screening survey in local villages, where we found and treated 11 people living with leprosy. Pictured: Residents of Hyderabad, India taking part in the Walk to Beat Leprosy
In this issue Page 3
Our sustainable approach
Page 4
Francisco’s story
Page 5
Going against the grain in Mozambique
Page 6
The gift of sight
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Our community
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Get involved
Join our online community:
Facebook.com/LepraHealthinAction @Lepra_HinA linkedin.com/company/lepra Instagram.com/lepra1 Pictured on the front cover is Francisco from Mozambique. You can read more about how a self-help group has improved his life on page 4.
Spring 2018
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An evening at the Athenaeum At the end of March, Chair of Trustees, Charles Bland hosted an evening at The Athenaeum Club in London. The event provided guests with an update on our efforts to beat leprosy and our work to tackle the rising number of cases for this disease. The guests, who included some of our long term supporters as well as those new to our work, endorsed the vital importance of continuing and escalating the fight to end leprosy.
Remember We’re moving to opt-in communications on 25th May. If you haven’t already confirmed that you would still like to hear from us, time is running out. To continue to see how your support is helping to beat leprosy, please fill in the “Keep in touch” section on the enclosed donation form and send it back to us, or email us on donorsupport@lepra.org.uk.
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Our sustainable approach There has been a huge decline of leprosy expertise within the medical infrastructure in India. We know that the services we provide such as footwear or ulcer care will not be offered by anybody else, other than organisations such as ours. Now more than ever, our work is vital to changing the lives of people affected by leprosy. Sustainability is embedded within the very core of our work. Our projects focus on delivering support over a long period of time rather than providing a one-off return. This enables people affected to go on and live normal, healthy lives with the tools they need to support and care for themselves long after treatment.
Sustaining this awareness is vitally important as it reduces stigma and empowers communities to manage leprosy treatment without intervention.
The starting place for this support is providing services and networks for people affected by this disease. This includes issuing protective footwear so that people can walk without fear of injury or infection.
Pictured: A man affected by leprosy practices self-care
We work to tackle lymphatic filariasis (LF) alongside our central objective of supporting and treating people affected by leprosy. This combined approach means that we can help even more people as both diseases require similar methods of care. By teaching self-care techniques which reduce infections and swelling in people affected by leprosy and/or LF, we can change thousands more lives every year. This means that we can deliver the biggest impact from the funding we receive. Finally, sustainability has to be seen in terms of awareness. Our community outreach and health education campaigns build up knowledge of the disease, its symptoms and the cure within communities and health systems.
It also helps individuals to take control of their health and seek treatment early before lifechanging disabilities develop.
Ashim Chowla, Chief Executive of Lepra India
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LepraNews
Spring 2018
Francisco’s Story Francisco is 53 years old and lives in the Zambézia province of Mozambique. Delayed treatment, caused by a late leprosy diagnosis, has left him with disabilities to his hands and feet, which seriously affects his quality of life. When Francisco was eventually diagnosed with leprosy, he was provided with the cure. However, his doctors did not give him the appropriate aftercare information which meant he was unable to properly care for himself. Unable to feel his hands and feet, he developed more and more injuries, which became infected and developed into ulcers. Francisco was left extremely weak by the infections, and he had no choice but to leave his job. Then, Francisco joined one of our self-care groups. These groups provide people with a support network, enabling them to share experiences, knowledge and combat isolation caused by the stigma of this disease. Not only has Francisco been able to improve his overall health and
wellbeing by learning to care for any injuries or ulcers, but he has also gained leadership skills which have allowed him to start a new business. Despite the long walk from his remote cottage, Francisco attends every meeting. “Our group is called ‘Okamiherana’. In our local language that means ‘We help each other’. That is exactly what we do. I’m very glad the group exists. I’m learning how to take care of myself properly. That’s essential because I have many ulcers on my hands and feet. I wash them every day and I wear sturdy shoes for protection,” he says. “To survive I grow various plants, such as beans, maize, and sorghum. And I have a
It’s thanks to supporters like you that Francisco, and many others like him, can set up self-help groups and support one another after a leprosy diagnosis.
banana tree and a mango tree. To earn a little extra I weave bamboo baskets. It takes a day or two to make one basket. I sell the finished ones at the Friday market.” Without early treatment, people experience permanent damage to their nerves. This is why it is so important for us to find people and treat them before leprosy takes hold. For Francisco, and over 4 million people like him, delayed treatment means that they will have to endure lifelong disabilities. However, through self-help groups they can gain skills and knowledge to lead normal, healthier lives and sustain themselves long after treatment.
Pictured: Francisco with his family
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Stay tuned on our social media channels for further updates about this project!
Going against the grain in Mozambique We’re pleased to announce that we have started a new project in Mozambique which will run until the end of February 2020. In Mozambique, people with disabilities are often excluded from efforts to improve livelihood and agricultural production because they are considered physically incapable. This project goes against the grain and dares to prove otherwise. Working in partnership with Netherlands Leprosy Relief and the Adventist Development and Relief Agency (ADRA), the project will ensure that people living with leprosy receive the timely treatment and care they need. It will also encourage community inclusion and access to self-help groups to promote sustainable living and self-care practices. It will break down barriers which often prevent people earning a livelihood after a leprosy diagnosis and help them to become self-sufficient. The project will support 50 communities in the Zambézia Province of Mozambique – a country where last year there were over 1,000 reported cases of leprosy.
What we will do • Build knowledge of leprosy amongst medical staff to diagnose, treat and prevent misdiagnosis • Provide assistive devices such as walking sticks, crutches, wheelchairs and tricycles to improve people’s independence • Provide agricultural training for self-help group members so individuals can set up or improve their smallholding • Train members of self-care groups to lead their community in taking charge of their own health to prevent illnesses and disabilities • Increase awareness of human rights so community members can advocate for better health and agricultural services Maartje Pronk, Programmes Officer for Mozambique has worked with our partners to implement this project: “The project will integrate people with a range of disabilities in the various
activities. It will not only promote health seeking behaviour, but it will also help beneficiaries learn how to sustain themselves if leprosy has prevented them from earning a livelihood. People will be supported in their self-care groups to organise themselves in farmer’s organisations and to provide training in adaptable and sustainable farming techniques, nutrition practices and health educational awareness.”
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LepraNews
Spring 2018
The gift of sight
Visual impairment is a common result of leprosy; studies show that approximately 25% of people affected experience eye conditions. It can damage the function of the eyelid, meaning that people are unable to close their eyes, which leads to eye infections and eventually cataracts. Due to the stigma surrounding leprosy, many people affected by this disease struggle to receive treatment for eye conditions. Prejudice still exists even within the healthcare sector, and many people, particularly those living in leprosy colonies, feel reluctant to seek the care they’re entitled to. This is because specialists may refuse to treat them, leading to further distress and self-stigma. Our work, led by the Mahanadi Netra Chikitsalaya (MNC) eye hospital in Odisha, India is helping to tackle leprosy-related eye conditions and reduce blindness. The MNC hospital, which we opened in 2005 as part of a
Residents of the Sonnepur leprosy colony wearing protective eyewear
joint project with Sightsavers International, now provides services to a population of over two million in western Odisha. This includes special eye-screening camps for people affected by leprosy. Recently, the MNC conducted a screening camp at Hatibari leprosy colony in the Sambalpur district of Odisha. The colony is home to 170 people affected by leprosy and the screening found over 60% of residents were experiencing eye problems. Minor eye issues were treated at the camp and those with cataracts were referred to the MNC hospital for their operations.
After the operations, they were also provided with glasses and given advice on protecting their vision. Blindness can have horrendous consequences for anybody affected, however, for people with leprosy, this, combined with other disabilities and stigma can not only affect their health, but also their emotional wellbeing and increase feelings of isolation. It’s thanks to your support that we are able to run projects like this to improve the lives of those living with leprosy. Together, we are helping protect the sight of people who, due to leprosy, have faced many challenges already. Improving sight and preventing loss of vision helps to ensure they do not suffer further exclusion and can continue to live independent lives.
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Are you inspired by our fundraisers?
Our community From pub quizzes and tea parties to setting karate club records – here’s some of the fabulous fundraising which has been happening across the UK.
A pub quiz fundraiser
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Members of the University of Birmingham Lepra Society took on a new meaning of ‘University Challenge’ by testing their knowledge and arranging a pub quiz to raise funds to beat leprosy. They raised over £100 in total – enough to provide 30 self-care kits!
Find out about all of the different ways you can get involved with our new fundraising guide. Visit lepra.org.uk/fundraising-guide to download your copy.
A take on the Karate Kid Emily Morrison from The Folkestone School for Girls practiced her ‘hiyah’s!’ recently by punching a punch bag at her Karate club 1,534 times in just 10 minutes. She raised over £100 in total and her school has raised over £2,000. What an amazing result!
A trim to change lives The London Fo Guang Shan Temple raised over £1,200!
Life-changing tea parties A big ‘thank you’ to our supporters who put their baking skills to the test by holding life-changing tea parties for International Women’s Day. We’re so grateful for all of your support!
After growing her hair for the past year, Ava Lock-Phillips raised over £2,600 by choosing to cut 12 inches off and donate the funds raised to support people affected by leprosy!
You can host a life-changing tea party at any time throughout the year.
Jen Lomez and her friends raised £132 at their life-changing tea party
Visit lepra.org.uk/life-changing-tea to request your free host pack for everything you need to make your party a big success!
LepraNews
Get involved
Spring 2018
Help generations to come
Photo credit: Lesley Martin
A gift in your Will is a powerful way for your support to live on into the future.
Dog Jog Are you looking for a fundraising challenge with a difference? The Dog Jog series offers unique and relaxed 5k jogging events for you and your furry friend to get fit and have fun whilst raising funds to beat leprosy. Dates are available at multiple locations across the UK from July to October.
There are millions of people across the world suffering from the effects of leprosy. Your legacy can help to ensure they receive the treatment and life-long care they need. It will also help fund new projects to reach a day when leprosy no longer exists. If you would like more information, please contact our Donor Support team by telephoning 01206 216700 or by emailing donorsupport@lepra.org.uk. You can also download or request your free information booklet at lepra.org.uk/gift-in-your-will.
Edinburgh to St Andrews
Remember
If you’d like to continue to see how your valued support is helping to make a difference to the lives of so many people, please tell us by 25th May – otherwise, you may no longer be able to hear from us. Simply email
donorsupport@lepra.org.uk to let us know, or tick the box at the bottom of your donation form and return in the freepost envelope enclosed. P.S. We’ve also updated our Privacy Policy. Visit lepra.org.uk/privacypolicy to find out more.
The oldest cycle ride in Scotland is back for another year. Why not take the challenge this summer and pedal the 68-mile route? You’ll cycle over the Forth Bridge, weave through the picturesque Scottish countryside and finish on the coast. There’s even the chance to stop for afternoon tea along the way! Date: 16th June To register, or to find out more about any of our events, visit lepra.org.uk/events. You can also contact us by emailing events@lepra.org.uk or telephoning 01206 216700.
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)
Here’s one we made earlier Do you remember our Blue Peter Appeal in 1996? It raised an amazing £2.8 million! If so, we’d love for you to tell us your memories. Maybe you held a Bring and Buy Sale – or perhaps you saw it on TV? Please email fionag@lepra.org.uk and you could be featured in a campaign later in the year.