122102 lepra spring newsletter 2015 web

LepraNews Spring 2015

www.lepra.org.uk

In this issue • Returning to Mozambique • Freeing women from the shadows • We welcome a new Chairman and a new Ambassador

Patron: Her Majesty The Queen

In this issue Leprosy-affected women at a self-help group in Sherpur, Bogra.

Page 3 A warm welcome to our new Chairman

Our front cover features a leprosy-affected mother and her daughter in Mozambique.

Pages 4 & 5 Returning to Mozambique

We update our Facebook page and Twitter tweets daily so please like and follow us!

Pages 6 & 7 Freeing women from the shadows; our new Ambassador Page 8 2

Fundraising and events

Read more about our work on page 4.

facebook.com/LEPRAHealthinAction @Lepra_HinA We’re also on Instagram! instagram.com/lepra1

“ I have seen for myself the scale of the need and I am proud to be part of Lepra”

Restoring the lives of forgotten people There was great excitement before Christmas when we heard that we had been awarded a Big Lottery Fund grant of £487,000 towards our new project in Bihar, India.

This ambitious five-year project started on 1st April and will make a life-changing difference to around 187,000 people directly affected by leprosy and lymphatic filariasis (LF).

I am honoured to be the new Chairman of Lepra. I am taking over from Sir Ronald de Witt who did so much to give Lepra its present strength and sense of direction.

My personal connection with leprosy started many years ago in India. A friend took me to visit the leprosy hospital at Vellore in southern India, where I saw the rehabilitation work done to help people affected by leprosy regain their livelihoods and self-respect. I was deeply moved and got in contact with Lepra here in the UK. When I retired in 2009, I joined the Board.

Since then I have visited India with Lepra.

I’ve seen first-hand the scale of need and the quality of our projects. Thanks to the generosity of supporters like you, this incredible work has already transformed thousands of lives.

Our commitment to fighting disease, poverty and prejudice drives everything we do.

I am proud to be part of Lepra and hope that during my tenure I will be able to support the people who work so hard for us, both here in the UK and in our projects in India and Bangladesh, and now in Africa.

Thanks to the Big Lottery Fund grant and your continuing support, we will provide treatment and care for around 4,000 people affected by leprosy and 116,000 people with LF. We also aim to improve the lives of 67,000 people with LF by reducing lymphoedema (swelling of the legs) through teaching self-care techniques such as cleaning and massage.

Reaching 465 villages in Samastipur district Helping 187,000 people affected by LF and leprosy

Charles Bland Chair of Trustees 3

Returning to fight disease in Mozambique After focusing on India and Bangladesh for the last five years, in 2015 you are helping us return to fight disease, transform communities and change lives in Mozambique.

In 2010, we decided to concentrate our efforts against leprosy and lymphatic filariasis (LF) solely within India and Bangladesh. We did this so that we could focus your donations where they would have the greatest impact, as nearly 60% of the world’s leprosy cases and 40% of LF are in these two countries. In that time, we have learned and achieved so much, particularly about working in an integrated way with both diseases.

In just five years, you have helped us: •B reak down the barrier of stigma for thousands of children and adults who were too frightened to get diagnosis and treatment •D evelop hundreds of self-help groups for people with leprosy or LF so they can help each other to live with independence and dignity •C hampion the crucial role women play in communities across India and Bangladesh •E ducate the next generation about leprosy, stigma and more via school visits •T ransform the lives of millions of people 4

Now we have the chance to take everything you have helped us learn in India and Bangladesh and use it to help people facing disease, poverty and prejudice in Mozambique.

Lepra and Netherlands Leprosy Relief This amazing opportunity to return to Mozambique is the result of a partnership between Lepra and Netherlands Leprosy Relief (NLR). This is a highly costeffective way for us to provide services and share our expertise and skills. It couldn’t have come at a more crucial time for the people of Zambezia Province where we will be working.

In Zambezia, three more lives are devastated by neglected diseases every day Zambezia is the second most populated province in Mozambique with around 4 million people. It’s also a region blighted by neglected diseases. Around 300 people are diagnosed with leprosy each year and millions are at risk of lymphatic filariasis.

In September 2014, an NLR team visited Zambezia. What they witnessed shocked them.

“ It’s really exciting to return to Mozambique.

Our team will be able to bring a wealth of knowledge, experience and skills from India and Bangladesh and put them to use in communities blighted by neglected tropical diseases. We will make sure leprosy services are within reach of the people of Zambezia and start tackling the serious issue of disability due to lymphatic filariasis (LF).

I look forward to sharing our progress with you.”

Sarah Nancollas, Chief Executive.

Sarah in Bangladesh.

Levels of knowledge amongst health workers about leprosy and other neglected diseases had dropped alarmingly. Selfcare groups, which had been successfully run by Lepra until 2010, had collapsed. Even more disturbing, in most communities people with disabilities struggled to get even basic healthcare and were totally dependent on their families. What little action the NLR team found focused only on awareness campaigns and medicine distribution.

People in Zambezia urgently need better support – and you can help We decided to support the vital work to be delivered by NLR in Zambezia Province. This is the

first time NLR has worked in this province and integrated its approach to leprosy and LF. With your help, we hope to see big changes over the next few months.

Starting new self-care groups NLR has already helped to establish 60 successful self-care groups for people with leprosy in nearby Nampula and Niassa provinces. Combined with our own learning from Bangladesh and India we hope to use your donations to create new selfcare groups for isolated people with leprosy and LF in Zambezia Province.

Rebuilding knowledge of neglected tropical diseases It’s crucial that knowledge amongst health workers in Zambezia improves so they can start finding suspected cases of leprosy and LF and get people diagnosed and treated early. With your help we will be supporting refresher training and providing information for hundreds of health workers.

Spreading awareness through at-risk communities It’s vital that ordinary people in at-risk communities are also able to spot the early signs of disease and know where they need to go for help. That’s why your donations will also help to fund the training of community educators: local people who are willing to share their personal experiences of leprosy or LF with others.

With your continuing support, this vital work in Zambezia should lead to earlier detection and better care for people with leprosy and LF. Together we can make our return to Mozambique a success for people at risk of disease, poverty and prejudice.

£15 could

help to train a health worker in Mozambique to spot the early signs of leprosy and LF 5

Adding another expert voice to our team

We are delighted to welcome our new Ambassador, Mr Rajeev Sharma, a Consultant Orthopaedic Surgeon at the QEII Hospital in Welwyn Garden City and Spire Harpenden Hospital.

He specialises in upper limb surgery and is a trainer and assessor for orthopaedic surgeons.

Originally from Indore, Madhya Pradesh, India, he was awarded an Honorary Professorship in Orthopaedics by the Sri Aurobindo Institute of Medical Sciences and has helped design operating theatres in India.

As our ambassador, Mr Sharma will be focusing on raising awareness of our work within the medical fraternity through his association with surgeons, hand therapists and physiotherapists and will represent us as an expert voice on reconstructive surgery.

6

To free women from the shadows, we need to be 3,000 strong Every day, thousands of women and girls affected by leprosy face appalling discrimination and domestic abuse. They are cast out, abandoned and sometimes severely beaten.

The shame and stigma they feel causes them to hide themselves away. The more those women hide, the worse the disease progresses. If untreated, it can lead to permanent disability.

as many vulnerable women as possible – to help girls detect their leprosy early and get the treatment they need; to give women the support to overcome prejudice, violence and fear; to empower women to stop hiding away and take their place at the heart of their families and communities.

That’s why we recently launched an ambitious campaign to reach

To achieve this ambitious aim, your donations are helping us

We need your help to be 3,000 strong

to recruit and train an amazing army of 3,000 female health workers. Women like Rachna who have been affected by leprosy themselves and know the pain and fear that drives people to hide away. Women who also know the joy of being cured and, with our help, have successfully stepped out of the shadows to rebuild their lives.

With training in how to spot the early symptoms of disease, with self-care techniques, with their experience and passion – and with your help – female health workers like Rachna are a powerful force for good.

As Rachna says:

“ People think that leprosy is caused by witchcraft or destiny. They think it spreads easily through touch. Now it has become my mission to change these attitudes. I feel I can help others to be cured as I was, because I’ve been through it and understand that stigma.”

Our aim is to recruit and train 3,000 female health workers. In total we need £64,000 to achieve this. So far, you have helped us raise more than £20,000.

APPEAL UPDATE

Thank you if you have already donated – we are starting to put your money to good use recruiting volunteers. The next phase will be to use your donations to train these women to become community health volunteers.

We will keep you informed of our progress in future issues and, if you are inspired to train more women, it is not too late to donate at lepra.org.uk/ appeal/women-leprosy

A pioneer who has been fighting leprosy for a lifetime As we highlight the huge role female health workers have to play in fighting stigma, we’d like to introduce you to an incredible lady.

Lady Patricia Rose is a retired doctor, now aged 91, who still inspires us with her energy and enthusiasm. From 1988 to 2004, we were fortunate to have Dr Rose as Clinical Consultant and a member of the Medical Advisory Board and Executive Committee.

Following the tragic death of her husband, Sir David Rose, in 1969, Patricia started work in Guyana with the government’s leprosy programme.

Guyana was the first country to start the multi-drug therapy to cure leprosy and Patricia was the first person to introduce this countrywide. This true pioneer of the fight against leprosy continues to be a passionate fundraiser and advocate for us to this day.

“ David and I always wanted to do something for people less fortunate than ourselves. From the start, I insisted that people affected by leprosy should not be institutionalised. As far as possible, they should be able to live at home and receive care and support there. We should always remember that we are dealing with people, not statistics.”

7

Fundraising stories Trek Crete

Leprosy walk in India

Do you love travel and walking?

We have the perfect challenge for you: walking through gorges, along rugged cliffs to the peak of Mount Ida in Crete and visiting Spinalonga, home of a former leprosy colony. The icing on the cake will be the opportunity to meet Victoria Hislop, author of The Island and our leprosy Ambassador.

On Sunday 1st February, Lepra in India organised a walk to raise awareness of leprosy and raise funds. His Excellency the Governor of Andhra Pradesh and Telangana, Shri E S L Narasimhan, started the walk.

Over 1,500 people took part, including people affected by leprosy, and raised more than £1,800. What a fantastic achievement!

A roaring success

The group will depart London Heathrow on Sunday 27th September and return there on Sunday 4th October.

Registration is £290, plus minimum sponsorship of £1,700 per person. All flights, transfers, accommodation and most meals are included, as well as local guides and a full support crew.

For more information contact Lizzie Dearling on 01206 216700 or events@lepra.org.uk

A huge thank you for an amazing donation of £75,000 from Moor Park Lions Club, the proceeds of a fundraising auction at their Gala Ball last year. President Shirish Amin, Treasurer Himanshu Bavaria and their Lions worked tirelessly to make this event a success. It was a wonderful evening, attended by around 300 guests at the Intercontinental Hotel in London’s Park Lane. We were greatly privileged to be their chosen charity.

Thank you!

Thank you!

A big “thank you” to Tim Gabb and his team at Haddenham Healthcare, who are donating specialist compression garments for people affected by lymphoedema, a painful symptom of lymphatic filariasis (LF). Mahesh, who has had LF for more than 18 years, describes his compression stockings as “magic socks which have brought back happy days”!

Pupils at St Augustine’s RC High School, Billington, Lancashire (pictured above) had great fun with a workout after raising more than £1,800 for us. What a fantastic effort!

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

Trek Crete 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) 2102/D/AB