Lepra News September

Autumn 2019

lepra.org.uk

In this issue ‘£1 from you, we get two’ appeal launches World Leprosy Day 2020

Patron: Her Majesty The Queen

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LepraNews

Autumn 2019

Rachna Speaks at UN Human Rights Council Rachna Kumari, who works for Lepra Society in Bihar, India, was an invited guest of UN Special Rapporteur for Leprosy, Alice Cruz, and spoke at a UN Human Rights event in Geneva, on 27th June 2019.

Alice Cruz's role as Special Rapporteur is to work as an independent expert appointed by the Human Rights Council to examine and report back on a specific human rights theme; in this instance on the elimination of discrimination against persons affected by leprosy and their family members.

Rachna spoke about her experience of being diagnosed with leprosy, and the discrimination and hardships she faced. She spoke about how she overcame these issues after being cured, and how she is now a respected member of the community.

Fighting for Futures Event In June we held a key event in our calendar “Fighting for Futures” in the presence of our Vice President, HRH The Duke of Gloucester KG GCVO at The Imperial War Museum, Duxford. The event secured over £34,500 in pledges, which we continued to build on. This pledge funding will be released during our ‘£1 from you, we get two’ appeal which commences on 16th September.

The event gave us a chance to thank our wonderful ambassadors, supporters and sponsors.

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In this issue Page 3

“£1 from you, we get two” appeal launches

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World Leprosy Day 2020 Partnerships and Legacies

Rachna called on governments to do more to prevent discrimination and prejudice, even where laws may have been repealed.

“In India, the Supreme Court has directed the central government and states to take steps to fight laws that discriminate against those affected by leprosy. However, there are various stakeholders who do not understand these issues.

Some progress has been made but we need to work more on raising awareness about the cure, so that there is no discrimination against people affected by leprosy”.

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Leprosy In Africa

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Fundraising Stories Ambassadors

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Get Involved

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Dasamanti’s Story

Join in the conversation on social media: LepraUK

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LepraUK

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‘£1 from you, we get two’ appeal launches Last year, we launched our first ever ‘£1 from you, we get two’ appeal which saw us raise over £130,000. We are delighted to be relaunching the appeal which will run from 16th Sept, with the first £34,500 of donations being doubled.

This year, our appeal focuses on our Mental Motivators pilot project, launched in Bangladesh in May 2019. This project enhances the existing self-care/self-help groups, with the addition of a mental wellbeing support service.

The objective of the project is to “Improve self-esteem, status, social interaction and inclusion”.

Mental Motivators have a dual role: 1. As a counsellor; Providing advice and support to people that would like someone to talk to about their wellbeing.

2. As a ‘signpost’; Advising on rights based issues and linking group members to training, employment and social opportunities, such as how to access a government disability pension. The groups offer people the opportunity to set up bank accounts (which usually they are denied from doing) along with modest interest free loans to finance business initiatives such as starting a local shop or developing a tailoring business, thus promoting financial independence.

With more than half of people with newly diagnosed cases of leprosy and lymphatic filariaisis (LF) developing anxiety or depression, our Mental Motivators project provides an important service to improve the mental health and quality of life of up to 10,000 families.

Lepra Ambassador Stuart Miles visited Lepra’s Blue Peter Public Health and Research Centre in Hyderabad, India last year and saw first hand the impact of leprosy on people’s mental health. He met Adriana, who felt that she was no longer beautiful due to her leprosy diagnosis.

What can you do?

Why not hold a Life Changing Tea, or have a Socks and Sandals day in your office? You could invite one of our countrywide fundraisers to come and speak to your community, membership or faith group to find out more about our work.

Our Mental Motivators project is coming to the end of its first quarter and so far 30 people have been trained as Mental Motivators from 4 targeted districts, all providing invaluable peer support. With your support, we can reach out and make a real difference to the lives of the people we work with.

“She broke down when telling her story and it really brought it home to me. There are so many mental health issues, including depression, anxiety and even suicidal thoughts which can result after a diagnosis of leprosy or LF as the people affected face prejudice, discrimination and worry about their future.”

Stuart Miles

Please help our ‘£1 from you, we get two’ appeal get off the ground by organising an event.

Please get involved!

www.lepra.org.uk/ fundraise

Why not host a special event, participate in a challenge, share your thoughts on social media or simply donate at www.lepra.org.uk/donate

Your amazing donations from last years’ appeal helped us to continue our vital research on the transmission and treatment of leprosy, alongside helping us to support over 283,000 people with leprosy and lymphatic filariasis (LF) in the last 12 months.

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LepraNews

Autumn 2019

World Leprosy Day 2020 World Leprosy Day is on Sunday 26th January 2020 and once again we will be marking the day with a variety of events to raise awareness of leprosy and the prejudice and discrimination that often results.

We will be drawing attention to the need for continued investment to ensure every person affected by leprosy receives treatment as early as possible.

We will be holding two awareness raising events, the first at Ripon Cathedral on 26th January during Evensong, and the second at the House of Lords on 28th January. If you are interested in attending either event, please do make contact with Karen on 01206 216700 to find out more.

The events will provide an opportunity to learn more about the wider work of the charity.

A central tenet is to bring guests from a range of faiths together, to see how we can all learn and help the noble cause of the charity in India, Bangladesh and Mozambique.

Visit our website for more details about all of our World Leprosy Day events and activities: www.lepra.org.uk/events

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Partnering with Lymphedema Support Suffolk In June, our Director of Programmes Paul Watson visited Lymphedema Support Suffolk (LSS), giving a presentation about Lepra, highlighting the important work we do in finding, diagnosing and treating people affected by leprosy and lymphatic filariasis (LF). Following the presentation, LSS kindly donated special support bandages which will be used to help people affected by LF in India. We would like to pass on our heartfelt thanks to LSS for their kind donation. Together we will beat leprosy.

A legacy of hope

£2,820

could pay for a counsellor for 1 year, to help people and their families affected by leprosy understand their diagnosis, giving them increased opportunity to return to school and employment.

Leaving a gift in your will can help change the lives of others!

By leaving a legacy in your will to Lepra, you can help fund vital projects that support the 7 million people known to be affected by leprosy. Your gift could: • Offer education to recognise the symptoms of leprosy • Provide treatment to improve the symptoms or cure them • Deliver a network of support to help people overcome prejudice and discrimination • Help to permanently change lives, and beat leprosy

£600

could train 30 village doctors to recognise the symptoms of leprosy and LF, meaning people are diagnosed and treated sooner.

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 Karen by telephone 01206 216700 or email donorsupport@lepra.org.uk

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Leprosy in Africa It is now widely recognised that the declared global ‘elimination’ of leprosy, soon after the turn of the millennium, was premature and there are indications that the disease is re-emerging in many African countries. The expertise to identify, diagnose and treat leprosy has largely been dismantled in these countries, together with support for those people living with the physical disability, prejudice and mental health challenges associated with the disease.

Disability and poor footwear, person affected by leprosy, Mutemwa Leprosy and Care Centre

While the global reported number of new cases detected was 210,671 in 2017 (World Health Organisation (WHO)), it is estimated that more than 3 million people are living with undiagnosed leprosy around the world today. Although India continues to account for almost 60% of the recorded new cases of leprosy, there are grounds for concern regarding the re-emergence of leprosy in Africa with WHO identifying 18 countries that need particular attention:

Six high leprosy burden countries with a risk of rapid expansion of the disease: • • • • • •

Democratic Republic of the Congo Ethiopia Madagascar Mozambique Nigeria Tanzania

Currently, Lepra funds and provides technical support to a combined leprosy and lymphatic filariaisis (LF) project in Zambezia Province, Mozambique, implemented by Netherlands Leprosy Relief (NLR), the Adventist Development and Relief Agency (ADRA) and the government. Building upon this southern Africa focus, Lepra has been exploring the real needs on the ground in three countries: Zambia, Malawi and Zimbabwe.

Discussions with government and NGO staff in these countries, confirms that there is genuine concern about the re-emergence of leprosy and recognition that the skills and infrastructure available to diagnose and support people affected by this chronic disease are no longer readily available.

Six medium burden countries with low risk of expansion: • • • • • •

Angola Côte d’Ivoire (Ivory Coast) Ghana Guinea Malawi Niger

On a recent visit to Zimbabwe, a WHO Officer shared the story of a person with acute, highly infectious, multibacillary leprosy, who had taken more than a dozen consultations to properly diagnose.

On the same visit, outside of the capital at Mutoko, in one of the few centres still supporting people affected by leprosy, it was observed that patients living with disability would greatly benefit from the footwear and self-care techniques that Lepra has developed and applied in India and Bangladesh.

Initial investigations suggest that the knowledge and skills that Lepra has acquired in Asia might usefully be shared with governments and NGOs in Africa. These groups are ready to learn, or re-learn, how to

Six countries that require close surveillance for early detection of any increase in the trend of the disease: • • • • • •

Burkina Faso Cameroon Chad Liberia Sierra Leone Zambia

treat and support people affected by this disabling and persistent disease, once again emerging within mainstream health care systems.

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LepraNews

Autumn 2019

Fundraising Stories School’s Fundraising John Colet School At John Colet School in Wendover, Buckinghamshire, the Year 7 students worked hard with their fundraising.

Maddy and Olive held a bake sale where they sold an impressive 72 cakes and raised an amazing £56.

In total, John Colet students raised an incredible £1,155.

A big thank you to everyone who got involved and donated!

Sri Vidyanjali High School Kasturi Kilaru, Head of Fundraising at Lepra Society, India recently visited Sri Vidyanjali High School in Hyderabad to talk about the work Lepra does in finding and treating people affected by leprosy. The students were really keen to get involved, and arranged a school fete where they sold handmade items to their friends, family and local community. They raised an impressive £1,300 (120,000 Rupees) which they donated to Lepra. Ashim Chowla, CEO at Lepra Society visited the school to congratulate and thank the children for their fundraising activity.

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Laughs for Lepra Comedy is a great way for people to engage with charity and in July the world famous Backyard Comedy Club in Bethnal Green held a comedy night in partnership with Lepra. The audience enjoyed laughs from Markus Birdman, Alexander Bennett and Sean McLoughlin, whilst also finding out more about the important work Lepra does.

Take up a challenge for Lepra!

Challenge Ambassador

Please visit our website

www.lepra.org.uk/events

Tom Barton Becomes Lepra Challenge Ambassador

or contact our Events Team on

01206 216700

Tom Barton recently joined Lepra as our new Challenge Ambassador.

Tom will be focused on raising awareness of fundraising via challenge events such as The London Marathon, Ride 100 and individual fundraising.

Tom is no stranger to taking on challenges for Lepra. He has tackled 11 Marathons so far and recently completed the 46-mile Test Way challenge in 9 and a half hours, raising over £2,000 in memory of his late father Rex, who researched leprosy.

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Naturally Supernatural Soul Survivor Event Lepra attended the recent Naturally Supernatural Soul Survivor event which ran between 27th July – 1st August at the Stafford Showground. Our fantastic team had a stand during the event to raise much needed awareness of leprosy and the work Lepra does to help those affected by the cruel disease.

Attending the event allowed our fundraisers to meet those attending the festival, and to showcase the work the charity does in finding, diagnosing and treating people with leprosy and lymphatic filariasis.

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Saddle Up to Beat Leprosy

Get Involved Festival Volunteering Festivals are a great place to meet people, have fun and get involved in helping us to beat leprosy. Lepra is now part of MyCauseUK, a site which offers you a ticket for festivals including British Summertime, Lovebox and Shambala in return for volunteering.

Once you complete your agreed shifts, MyCauseUK will donate to Lepra and you can enjoy the fun of the festival. If you’d like to know more, visit our website: https://www.lepra.org.uk/festival-volunteers

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Lepra Partners with Giving with Gifts We are delighted to have been selected as one of online retailer “Giving with Gifts” chosen charity partners. “Giving with Gifts” offers a wide range of gifts for all occasions including days out, experiences, homewares and personalised gifts. An amazing 5% of EVERY purchase goes to the charity partner of your choice, meaning you can help us to beat leprosy every time you purchase a gift or experience.

Cycling is a great way to stay fit, challenge yourself and help us to beat leprosy.

There are two major rides in 2020 that you can be part of.

Our popular Edinburgh to St. Andrews ride will return on 13th June 2020, with riders completing the 68-mile journey through the wonderful Scottish scenery. With 400 participants able to take part, this astonishing adventure offers to be a real family event and we look forward to welcoming you for tea and cake along the way.

In August, the Prudential RideLondon 100 will see 25,000 riders tackle a course based on the London 2012 Olympics race route. We are actively seeking organisations to support us develop this as part of their workplace challenge.

If you are interested in finding out more, please visit out website: www.lepra.org.uk/events

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Prudential Ride100 Our champion cyclist Imran completed the Prudential Ride100 on 4th August raising over £300 for Lepra.

Imran has cycled the challenging route for the past 2 years raising an impressive total of over £900. A big thank you to Imran for your continued support.

For further details visit:

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https://www.lepra.org.uk/donate-online-shopping

Your Present, Their Future

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With Christmas just around the corner, instead of a Secret Santa, why not dedicate your office Christmas to changing lives?

Nearly Festival Lepra’s fundraising team dressed up as different cartoon characters at a local music festival to help raise awareness of leprosy and the vital work the charity undertakes.

Taking centre stage as characters such as Woody from popular children’s animation Toy Story, and Boots from Dora the Explorer, Lepra’s team were able to engage with festival goers and families at the Nearly Festival in Colchester in August.

Share your Secret Santa or special occasion with us to help someone affected by leprosy or LF. Remember, your donation goes a long way in helping people affected by leprosy and LF, including providing comfortable and supportive footwear, encouraging the healing of wounds and preventing further injury and disability. Your donation could help us to find families who would not otherwise be diagnosed, helping us to prevent and limit disabilities caused by late diagnosis.

Donate via our website, or run your own fundraiser on Facebook.

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LepraNews

Autumn 2019

Dasamanti’s Story

Lepra and The Rotary Foundation Work to Beat Leprosy Together Lepra were pleased to welcome Mr Deepak Kapur, a senior Rotary leader in India, to London recently.

Hosted by our Chair of Trustees, Charles Bland at The Athenaeum Club, Mr Kapur met with our CEO, Geoff Prescott and Trustee, Nayan Patel to discuss ways that Lepra and Rotary can work together to help people affected by leprosy in India.

Dasamanti was just 6 when she developed skin lesions on her hand, back, side and thigh.

Gradually, her fingers on her right had began to claw, affecting her ability to move her hand. A local health worker encouraged her parents to take Dasamanti for further examination and treatment.

Unfortunately, her parents did not understand the urgency and it took a further 5 months for multibacillary leprosy to be correctly diagnosed.

Dasamanti began multi-drug therapy (MDT) for a year and while this cured her leprosy, the clawing of her hand remained and the little finger began to stiffen which left her unable to help the family with chores or attend school. She recognised that her friends were keeping their distance from her, even though she did not realise this was due to prejudice towards her condition. Meanwhile her parents found it difficult to commit to further treatment to improve her disability, as they needed to work to feed the family.

During a follow-up visit, a Lepra physiotherapy worker was able to assure her parents of the value of physiotherapy and reconstructive surgery to ensure a better future for Dasamanti. She spent 10 days prior to her operation having pre-operative physiotherapy, and then underwent reconstructive surgery to correct her clawed fingers. The surgery took place at the Lepra’s Sonepur Referral Centre, in Odisha, India with her grandmother accompanying her, and meant she regained function in her hand before her 9th birthday.

We are grateful to Mr Kapur for taking the time to discuss leprosy with us and look forward to working with him in future towards a day where we will beat leprosy together.

Today Dasamanti is a happy child who enjoys studying and has come through her leprosy experience without any long term effects.

With your help, children like Dasamanti will be found and diagnosed sooner, limiting the disabilities that occur if this cruel disease is not treated early.

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)

L-R: Nayan Patel, Deepak Kapur, Charles Bland