I hope the year has started well for you; it has certainly been a busy start for all of us at Lepra.
World Leprosy Day was marked at the end of January, and this year our campaign theme is ‘Shine a Light on Leprosy’. With our UK office in Colchester, we lit up the castle and other landmarks in the city in Lepra colours to raise awareness of leprosy, by ‘shining a light’ on this still neglected disease. We will continue to shine that light in all that we do to support people affected by leprosy in India, Bangladesh and indeed, the world.
In the run-up to World Leprosy Day, I attended a global leprosy symposium at the Vatican in Rome, to launch an appeal to ‘Leave No One Behind and End Stigma and Discrimination Against Persons Affected by Leprosy’
The event brought together experts from within the field of leprosy control and was co-hosted with the Catholic church.
His Holiness Pope Francis sent a personal message to the meeting and affirmed his emotional closeness to all those affected by leprosy, adding that “We have an opportunity to build an inclusive society that leaves no one in the margins” .
The Director General of the WHO, Dr. Tedros Ghebreyesus also gave a video address, saying that ‘we have come a long way, but we need to do more’ in our collective efforts to control leprosy.
It is so encouraging to hear these high-level endorsements for our cause. And it is so motivating to know that we are many with the commitment to keep shining that light on leprosy, and keep making progress towards its elimination in the world.
Lepra is a non-governmental organisation (NGO), and has been working to find and assist people affected by leprosy since 1924.
Since that time, Lepra has had two defining characteristics. Firstly, we are secular - a positive decision to favour no one and everyone. Secondly, we prioritise being evidence-led.
Leprosy is a communicable disease, caused by a bacterium, which affects the skin and peripheral nerves of
people affected. It can result in severe disability, prejudice and even cause blindness. Leprosy remains one of the least understood and most widely ignored diseases in the world. Millions of people are affected, with numbers continuing to rise. If left undiagnosed or untreated, leprosy can cause life-changing disabilities.
Leprosy can incubate in a human body anywhere between 6 months to 20 years. As a result, it is often difficult to diagnose the disease until it has already caused severe damage.
Working in India and Bangladesh, we find, diagnose, treat and rehabilitate people with leprosy. Specialists diagnose leprosy using a skin test patch for anaesthesia, slit skin smears, and non-invasive sensory investigations.
We also work tirelessly to fight the prejudice and discrimination people affected by leprosy face in their daily lives.
Our vision is a world free from prejudice and disability due to leprosy.
For World Leprosy Day 2023, we were joined in solidarity by organisations and businesses throughout our home city of Colchester, who helped us ‘Shine a Light on Leprosy’ by lighting up some of the most iconic buildings in Britain’s ‘first city’.
Buildings such as Colchester Castle, Town Hall, the famous water tower affectionately named ‘Jumbo’, The Mercury Theatre and Essex University helped us light up the historic city in Lepra’s distinctive colours.
Colchester occupies the site of the first Roman city and capital ‘Camulodunum’. There are written records of the site dating back over 2000 years, with further evidence of settlements as far back as the Palaeolithic and Mesolithic periods.
Construction of Colchester Castle began in 1076 when William I ordered a stone castle on the strategic route between East Anglia and London.
Although leprosy is no longer present in Europe, the disease certainly would have been prevalent at this time, with the nearby St. Mary Magdalen’s hospital on Brook Street, built in the early 12th century to treat people affected by leprosy.
For Colchester Castle to host our ‘New Faces of Leprosy’ exhibition therefore seemed like a fitting location. The moving images share the journey of people affected by leprosy, through diagnosis to treatment, and how they overcame the challenges they faced along the way, including discrimination and prejudice..
Over 100 guests joined us for the event in the Charles Gray room, with Professor Diana Lockwood and documentary photographer Tom Bradley. They kindly spoke to our guests about the origins of the project, and the importance of adopting a positive representation of people affected by leprosy.
Our visitors also enjoyed exploring the castle’s various exhibitions, with archaeological finds dating back sometimes thousands of years, which were brought to life by the castle’s expert tours
Thank you to Colchester Castle and everyone who supported the event, for helping us ‘Shine a Light on Leprosy’ in 2023. If you would like to see the exhibition or join us at future events, please contact CarolyneM@lepra.org.uk
Coincidently, on the same evening, friends and family of Elin Martin gathered in Gosport to see Portsmouth’s famous Spinnaker Tower bathed in blue, in memory of the 18 year old who tragically died a year ago.
Turn to page 7 to read more about Elin and the incredible legacy of hope she has left behind.
In this issue of Lepra News, we look at three of Lepra’s current research projects, which are helping to improve the quality of care for vulnerable communities in India, Bangladesh and beyond.
Throughout our 99 year history, Lepra have been at the forefront of research into new and innovative approaches to the detection, treatment and support for people affected by leprosy.
As an NGO dedicated to neglected tropical diseases (NTDs), Lepra is proud to be part of a family of specialist partner NGOs, dedicated to providing holistic care for some of the world’s most vulnerable communities. Under the banner of the International Federation of Anti-Leprosy Associations (ILEP), Lepra and partner NGOs are bringing together expertise in research and person-centred care to simultaneously enhance services and create evidence on what works best in community care
Current research methods and programme design, places great
important ethical consideration, but also leads to the development of programmes and practices which are more sustainable in the long-term.
In this spirit, Lepra and our partners at Canadian charity Effect Hope and German charity GLRA (German Leprosy & TB Relief Association) are embarking on a new research project in 2023 called UPLIFT – ‘Unlocking the Potential of Leprosy & NTD affected people, to pursue Inclusive, Fulfilling and Transformational lives, through a harmonized Community Based Group model’.
Over a three-year period, the partnership aims to undertake a detailed study of the function of community-based organisations, focusing on India, Bangladesh and Ethiopia. Together we will try to identify what kind of communitybased groups prosper the most,
With 1-in-2 people affected by neglected tropical diseases experiencing moderate to severe anxiety or depression, UPLIFT will introduce peer counselling to half of the community-based organisations, chosen at random. This will give our mental health intervention a scientific base when measuring its added impact on health-seeking behaviour and, downstream, on physical and psycho-social outcomes.
The overall aim of the study is to develop a best-practice model for community-based groups and self-care in the widest sense. Once formed on bestpractice principles, they can be adapted to different contexts, and implemented in any community affected by neglected tropical diseases, anywhere.
This will ultimately give hope for an engaged, self-sufficient community with a lasting impact
ommencing in 2022, the first phase of the SAMARTH research project has been working in 3 endemic districts of Madhya Pradesh, India. Funded by Lepra and Effect , the project will assess the efficacy of a range of community-led therapeutic interventions such as mindfulness, peer counselling and other self-support group activities. The project will help to inform best practice in the support of positive for people affected
One such person to benefit from the SAMARTH project is Ms Priti Pal, a 17 year old from Manuriya village, Madhya Pradesh.
From a household of 7, Priti and her family are migrant labourers, reliant on finding temporary, low paid work Health inequalities for vulnerable groups such as migrant workers can mean that many people can struggle to receive the care they need in time to prevent disabilities.
Priti first noticed symptoms 5 years
before she was contacted by Lepra’s SAMARTH coordinator in August 2022. A lack of early treatment resulted in disabilities forming in her fingers and hands. Through fear and prejudice, she had become introverted, refusing to leave the family home and was clearly struggling with the emotional impact of her condition.
Lepra arranged for staff from the hospital’s leprosy department to visit her at home, where she was diagnosed and started immediate treatment with multidrug therapy (MDT).
To help Priti overcome the emotional impact of leprosy, SAMARATH arranged for ongoing personalised care from the project staff and close support from an ASHA (Accredited Social Health Activist), a trained volunteer from her local community who helped Priti access her local selfsupport group, which has been key to helping her regain confidence and find new hope for the future.
Through the support of the project, Priti is now making a great recovery, both physically and mentally. She is also receiving disability financial support from the government which is helping her overcome the socio-economic impact of her diagnosis, and allowing her to focus on a full recovery, and a brighter future.
Lepra’s Disability Initiative for Independent Living (DIIL) project is working to reduce the physical, psychological, financial and social impact on people affected by lymphatic filariasis (LF) and Leprosy in seven northern districts of Bangladesh. In its third year, the project aims to scale up and accelerate the activities which support ‘managing morbidity and preventing disability’ (MMDP).
Over the course of the project, 140 self-care practice groups have been formed, consisting of around 1400 members. These groups hold a particular importance, not only for the training and reinforcement of self-practice techniques, but also serve as an important, peer-led psychosocial support for its members.
In February, we were delighted to hear the latest development from DIIL. With funding and
support from the project, several people from the Nilphamari district are piloting a new element to the initiative. Members are being given plots of land, plus the tools and seeds to start their own local agricultural projects.
In addition to the food they can grow to supplement their families nutritional needs, the members can also sell produce to help provide additional income. As well as the important nutritional benefits, which are known to help promote a more effective recovery, the practice is thought to also have important emotional health benefits
It is hoped that the project will be expanded in the near future, with more people affected by leprosy and LF being able to benefit from this innovative approach to healthcare.
In January 2022, 18-year-old Elin from Portsmouth tragically passed away unexpectedly. Elin was a beloved daughter, granddaughter, sister, girlfriend and friend to so many, as well as a hard-working student.
Elin’s dream was to study medicine and train to be a Doctor, with a specific interest in neglected tropical diseases such as lymphatic filariasis (LF) and leprosy.
Following her untimely death, Elin’s family and those that loved her have supported Lepra in her honour, with an aim to create the impact that she wanted to have on the world. The dedicated fundraising that has taken place in Elin’s memory has been nothing short of remarkable and has included marathons, half marathons, local community fundraising, sports and music events and an incredibly brave daily sea swim challenge taken on by her boyfriend’s Mother Sam and sometimes joined by her Mother Deryn, and the cold-water bravery doesn’t stop there!
and Elin’s friends and family met to support one another and see Elin’s light continue to reach far and wide.
donations are enough to pay two nurses to look after patients post-surgery for a year. Finally, as part of ensuring we can reach people before their injuries need reconstructive surgery, the funds raised can train 15 village doctors to recognise symptoms of leprosy and LF, a crucial step in early diagnosis and treatment.
Sam Hope
29 January 2023 marked the anniversary of Elin’s passing, as well as also being World Leprosy Day. To acknowledge this, Portsmouth’s Spinnaker Tower in Gunwharf Quays was lit up in Lepra’s colours for the evening,
To date, the donations received in Elin’s name are £15,699. The impact of this for the people we support is incredibly significant. The donations are enough to enable us to run an operating theatre for a year, as well as fund a surgeon and a set of surgical instruments.
A surgeon working in this environment across a year can undertake 450 reconstructive surgeries. These reconstructive surgeries are vital to someone who has had a late diagnosis of leprosy and has become debilitated by the loss of movement in either their hands, feet, or both. As well as this, the
Going forward, we plan to place a plaque of remembrance for Elin in the garden of our Blue Peter Health and Research Centre in Hyderabad, which treats and supports over 200,000 people a year. The plans to rejuvenate the centre’s garden will mean that patients will have a calm and comfortable area to wait for their treatment.
Elin’s extraordinary passion will bring hope and dignity to the lives of so many people, and her light will indeed continue to shine long into the future.
Our sincere thanks go to everyone who has supported the range of challenges taken on in Elin’s memory
We are honoured to receive such heartfelt, meaningful support, and would like to reiterate that this continued kindness in Elin’s memory truly will make a lasting difference for thousands of vulnerable people
“I pledge to dip in the sea for a year in the name of Elin to raise money for Lepra”
Lepra’s ground-breaking work with vulnerable communities in India and Bangladesh is only made possible, through the kindness and generosity of our incredible supporters.
92p in every pound Lepra raises, goes directly to the projects and programmes our supporters care so deeply about. The remaining 8p, goes to help raise the next £1!
Although fundraising is crucial for our work, World Leprosy Day serves an equally valuable opportunity, for raising awareness of a disease which many people have forgotten even exists.
From World Leprosy Day and throughout 2023, we are asking our dedicated supporters to help us raise the profile of leprosy at a time when it’s most needed.
You can help bring attention to this neglected disease in many simple ways. Our collective actions, no matter how small, can make a huge difference to the global perception of leprosy.
Whether asking a friend to sign up for Lepra News, sharing our social media posts, booking a free talk for your school or place of worship or even offering your time as a volunteer, your positive actions can have a significant impact
Scan the QR code to visit our web-page and find out how you can help us ‘Shine a Light on Leprosy’ in 2023!
We are thrilled to announce that in February, our annual match funding campaign ‘£1 from you, we get two’, has hit its target a month early and raised an incredible £146,587!
Considering the economic difficulties which have affected us all throughout 2022, we are truly humbled by the kindness and generosity shown by our amazing supporters, who continue their unwavering support for the world’s most vulnerable people.
The wonderful Sheila and her son Anthony from sunny west Scotland took on a 5k walk to raise funds for Lepra’s work. Sheila told us that finding a dry Saturday in December proved trickier than the walk itself! We are absolutely thrilled to have Sheila’s support and pass on a huge thanks.
The money that Sheila and Anthony raised is enough to pay for a village exhibition to reach 100 people with vital key health messages, and help people affected by leprosy start their journey of treatment and recovery.
Contact AbiW@lepra.org.uk if you would like to tell us about your fundraising ideas and events!
This staggering amount will enable Lepra to continue it’s vital work in hard to reach communities, where it’s needed most.
Tens of thousands of forgotten people will benefit from the proceeds of this campaign. It is enough to run an entire project like UPLIFT, CHAI or ASPIRE for the duration of 3 years.
On behalf of the communities we serve, our deepest and most sincere THANK YOU for your ongoing support. With your help, we WILL beat leprosy!
SCAN ME
On World Book Day, 2nd March 2023, schools across the UK will be celebrating the power of books and promoting the love of reading.
ver the last 50 years, Lepra have worked with schools to help educate young people about the damaging effects of the world’s oldest and most neglected disease,
In partnership with celebrated novelist and Lepra Ambassador Victoria Hislop and Walker Books, Lepra provides a range of free educational resources, for schools across the UK, based on Victoria’s book ‘Maria’s Island’ - a dramatic and moving story set in the same world as the international bestseller ‘The Island’.
The book enables KS2 & KS3 teachers to carefully and sensitively explore curriculum-based themes such as prejudice, isolation, discrimination, and most importantly, hope.
If you would like to find out more about Lepra’s work in schools or to book a free fundraising talk, email Krista Dixon - KristaD@lepra.org.uk
For every £1 you donate, Lepra is able to claim an extra 25p back from HMRC, so long as you pay the basic rate of tax.
Better still is the fact that we can claim this retrospectively on all the wonderful donations you have made over the last 4 years!
Last year, Lepra’s Gift Aid claim was in excess of £106,000, which highlights just how vital maximising this scheme is. Funding of this scale can cover the cost of running 3 referral centres for a whole year, as well as pay for 2 brand new health education vans which visit remote villages in rural areas, providing vital support to people with leprosy and lymphatic filariasis who otherwise would miss out on vital healthcare..
By completing a gift aid declaration today, your wonderful donations will go even further and support people like Priti who you have read about in this edition of Lepra News.
To GiftAid your donation, simply fill in a Gift Aid declaration form online by visiting www.lepra.org. uk/get-involved/online-gift-aid-form, scanning the QR code below, or use the donation form enclosed with your Lepra News magazine.
If you are eligible, please take 2 minutes today to fill in a Gift Aid declaration and give more without spending more.
For more information on claiming back higher rate tax please visit the HMRC website.
PS. If you are a higher rate taxpayer, you can also claim back the difference between the higher rate of tax (40%) and the basic rate (20%) on the total (gross) value of your donation to us.
LepraUK
Lepra, 28 Middleborough, Colchester, Essex, CO1 1TG 01206 216 700 - www.lepra.org.uk - lepra@lepra.org.uk
Registered charity number: 00213251 (England and Wales) SCO39715 (Scotland)
GiftAid is one of the simplest and most effective ways to donate more to charity.Text © 2021 Victoria Hislop, Illustrations ©Gill Smith, Maria’s Island by Victoria Hislop & illustrated by Gill Smith Reproduced by permission of Walker Books Ltd, London, SE11 5HJ. www.walker.co.uk
