Spring 2019
LepraNews lepra.org.uk
In this issue Mental Motivators 95 years of working to beat leprosy
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Patron: Her Majesty The Queen
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LepraNews
Welcome to Kasturi Kilaru
Spring 2019
World Leprosy Day update Voices for change
Kasturi Kilaru has joined as Head of Fundraising at LEPRA Society India. Kasturi holds an MBA in International Business; an MSc in Molecular Biology & Genetics and Biotechnology; and an MA in English Literature. Kasturi also has experience of working in a variety of industries, ranging from Cancer Research, to Nutraceuticals and now Pharmaceuticals, bringing a wealth of knowledge to LEPRA Society. “I love meeting new people, developing new relationships, building and managing teams, solving problems and contributing to the overall growth of a business”. We are very pleased to have Kasturi join our team in this important position and we look forward to working with her.
In this issue Page 3
Building a mentally healthy workforce
Page 4
Mental Motivators
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95 years of working to beat leprosy
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Fundraising Stories
Page 8
Sajeran’s story
Join in the conversation on social media: LepraUK
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Pictured on the front cover is Sajeran from Bangladesh. You can read more about her story on page 8.
On Wednesday 30th January 2019, Lepra partnered with Cantata Dramatica to bring together an evening of contemporary choral music hosted by London’s St Stephen Walbrook church for World Leprosy Day 2019. A sold out crowd witnessed the performance, which featured the world premiere of Nick Bicat’s ‘Akathistos’, a dramatic retelling of the famous Orthodox Hymn that saved Byzantium from the Persian Siege in 626AD. It was a fantastic evening consisting of beautiful excerpts from the Cantata Dramatica chorus, led by James Potter, soloists, the Community Choir of St Stephen Walbrook, and featured dancers from Middlesex University, choreographed by Siân Hopkins. In attendance was guest speaker Roger Right, CEO of Snape Maltings and the Aldeburgh Music Festival who spoke about his experience with leprosy. We would like to say a huge thank you to everyone who performed or came along to support such a wonderful cause! Your generosity in time and money managed to raise over £2,500! We have collected over 748 signatures for the “I am not my disease, don’t call me a ‘leper!” petition. The petition has been sent to the UN Secretary General to highlight the discrimination and prejudice those with leprosy still face and to bring about important changes to the language used about leprosy.
Petition update
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Dr Rukmini Rao We were delighted to welcome Dr Rukmini Rao, Chair of Trustees of LEPRA Society India to the UK in February. Dr Rao’s visit continued to forge links between LEPRA Society India and Lepra in raising awareness of leprosy. Dr Rao said, “Often people think leprosy will disappear but the reality is in another two years, if no urgent action is taken, there are going to be another 2.5 million undetected cases and that is only in India”.
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Building a mentally healthy workforce Mental health is not a simple issue but rather an integral part of a person’s total wellbeing. A Bangladesh study in 2017 showed among people affected by leprosy, 53% experienced moderate to severe depression and 37% experienced severe anxiety. Research by Lepra illustrates that at least 1 in 2 people generally develop anxiety and depression after being diagnosed with leprosy or lymphatic filariasis (LF).
British High Commissioners Visit to Bihar The British High Commissioner, Sir Dominic Asquith recently visited our projects in Bihar, India, where he was able to see our work in the community and meet patients attending the Primary Health Centre at Tajpur. At the Centre, the High Commissioner saw first-hand people being diagnosed with leprosy, self-care instructions being shared, counselling and specialist footwear fittings.
Lepra’s new initiative “building a mentally healthy workforce” provided all staff at Lepra Bangladesh with tailor-made training from a Counselling Psychologist, Sister Gloria. During the two training sessions, the team at Lepra Bangladesh were given specialist training on anxiety and stress, including learning the techniques of active listening, stress management, mental health identification and management of depression and anxiety. Sister Gloria also demonstrated meditation techniques, and active listening activities, providing practical methods for the team to use when coping with anxiety and stress. It is hoped that with these new skills and understanding, the Lepra team in Bangladesh will be better equipped to deal with work related or personal stress,
alongside being able to use their knowledge to help beneficiaries overcome stress and anxiety. The Lepra Bangladesh team will act as ‘signposts’ for people who need further or more advanced counselling. Through addressing mental health issues, Lepra is developing a mentally healthy workforce with up-to-date knowledge and skills to offer better care for beneficiaries. Your support will allow us to help more people affected by leprosy and LF to get the holistic care and help they need.
Dr David Pahan – Director of Programmes, Lepra Bangladesh.
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LepraNews
Spring 2019
Mental Motivators Mental Motivators is a new project in Bangladesh which will allow people affected by disability due to leprosy and lymphatic filariasis (LF) to help others with mental health issues. Our research has found that 53% of newly diagnosed cases of leprosy and LF result in the individual developing anxiety or depression, however mental health services for the rural population in Bangladesh is scarce.
In Bangladesh, Lepra currently coordinates self-care groups, bringing together those with leprosy and LF to learn physical care that helps members manage their disability.
support to people with a disability. They will be trained in basic counselling skills, such as empathy and listening, and also on disability rights. Mental Motivators will support people who have indicated they would like someone to talk to, alongside pro-actively looking out for group members who seem to be struggling more than others, or who may seem withdrawn or unhappy.
Mental Motivators will be selected from these self-care groups and will provide peer
Mental Motivators will be key agents in improving mental health through an innovative
Risk factors for depression and anxiety in the context of these diseases include disability, discrimination, prejudice, displacement, marriage status and unemployment.
A legacy of hope
initiative focused on the holistic needs of people affected by these diseases. Mental Motivators will also act as a ‘signpost’ for their group, linking members to employment and social opportunities. Good mental health is critical to being able to take good care of your physical health, and to engage constructively with others in the community.
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 beat leprosy together then you can help us make this happen. By leaving a legacy in your will to Lepra, you can help fund vital projects that support the 7 million people affected by leprosy, offering
education to recognise the symptoms, treatment to improve the symptoms or cure them and support to help people overcome prejudice and discrimination. No one should be defined by their condition, and a gift to Lepra in your will can help to permanently change lives, and beat leprosy.
£15
can pay the travel costs for a family in a remote village to travel for diagnosis and during their treatment
£70
can fund educational support for a child living in a leprosy colony
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.
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95 years of working to beat leprosy Mr. Harjinder (Harry) Singh Gill I was born in Kenya of Sikh parents and the Sikh faith states that giving ten percent of one’s income to those in need is paramount. In 1962, my parents sent me to England for my education, and I lived in the Wimbledon YMCA. One Sunday the general secretary of the YMCA brought a speaker from Lepra to give a talk about their work. I was only 18, but that talk changed my life. That evening I
decided that whenever I had a steady income, I’d give ten percent of my income to Lepra.
Nicky Barton - My involvement with Lepra goes back to 1971 when my husband Rex was a Junior Doctor in the ENT department at St Mary’s Paddington. The Medical Research Council was seeking nasal biopsy specimens from
patients with lepromatous leprosy and with sponsorship from Lepra, Rex was able to travel to Victoria Hospital in Dichpalli, India.
I have set up a non-profit organisation called The Leprosy Association of Guru Nanak, Inc., in Santa Monica, California, where I now live. I have decided to contribute all the profits from my books, such as Hollywood Pioneer: The Life and Time of Hal Roach and Applied Calculus for Economics, to Lepra.
The purpose of his work was to clarify how leprosy spread in order to improve treatment Harriet Ireland - I am currently a student at the University of Edinburgh. I first heard about Lepra at a business charity event in London last summer and have since become a student representative, helping to promote all of the amazing work Lepra does at universities across the UK.
Harriet Ireland
Mr. Harjinder (Harry) Singh Gill
options. As a family we soon became involved with fundraising activities, starting in 1974 with our son Tom fundraising outside our local Sainsbury’s in West London! Other events followed which often involved Rex giving talks about the work of Lepra. I was inspired by the idea that we have the power to change the lives of people for the better. Lepra’s work raising awareness of leprosy with education initiatives, and also the fact that together we have the power to eradicate the disease completely, inspired me to support Lepra.
Voyages to Antiquity Victoria Hislop, best-selling novelist of The Island and ambassador for Lepra gave a presentation to the passengers aboard The Voyages to Antiquity cruise in mid-April, including discussing her visit to India and what inspired her to become an ambassador for Lepra. The cruise incorporated a trip to the island of Spinalonga, where Victoria based her novel The Island.
Victoria Hislop
We are delighted that Victoria was able to engage with those on board the voyage to continue to raise awareness about leprosy. Our thanks goes to Voyages to Antiquity who supported Lepra by allowing us to showcase our work.
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LepraNews
Fundraising stories
James’ Multiple Marathons Our Communications, Marketing and Fundraising Assistant James is running 4 marathons between March and June 2019 to fundraise for Lepra. By the time you read this, he will have completed the Colchester half marathon on 24th March and the Paris marathon on 14th April. James will then be running in the Ottawa marathon on 25th26th May and finally the Stockholm marathon on 1st June. James will also be taking part in an additional challenge in the Ottawa marathon of a 2km, 5km and 10km race on the day prior to the full marathon. You can follow James’ progress and donate via his blog at www.lepra.org.uk
Spring 2019
School’s Fundraiser Reigate Grammar School took part in an 80s inspired Zumba workout and raised a fantastic £3,453. The top fundraiser was Tyra Litten who raised £600 by selling 200 Victoria sponge cupcakes. Her family all helped with baking and donated all the ingredients, using 70 eggs, 3.5kg of caster sugar, butter and flour, and 3 jars of strawberry jam! Congratulations and thank you to Colchester County High School for Girls who raised a total of £6,044. Eva Bareham was the top fundraiser, raising over £200 by watching over 20 hours of Harry Potter continuously!
95 Challenge To mark Lepra’s 95th anniversary, James Byfield also ran 95 miles in the week coinciding with World Leprosy Day, running around 13.5 miles per day.
Colchester United collection – A big thank you to Colchester United FC and their fans who raised over £100 for Lepra in our recent pitch-side collection.
Abseil for Lepra Our fantastic fundraising team have decided to take a leap of faith, and will be abseiling down the ArcelorMittal Orbit in Stratford on 4th May to fundraise for Lepra. The ArcelorMittal Orbit is the UK’s tallest sculpture, at 262 feet high with 20 mile views across London. If you would like to support them their fundraising page is: https://bit.ly/2HH2x0i
Our Marathon Runners Team Lepra’s 12 marathon runners have all held a variety of events to fundraise for Lepra prior to the London Marathon on 28th April. They held casino nights, quiz nights and other exciting events to help them reach their fundraising targets. Our marathon runners this year were: Tahsin Khan, Tim Corfield, Monir Ahmad, Sophie Bailey-Smith, Paul Jordan, Nicky Ray, Anna Burnley, Michael Meister, Paul Rinder, Carlos Echeverry, Monica Samaca and Jo Brown. If you are interested in running for Team Lepra in 2020 please contact Olivia on 01206 216700.
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Upcoming events Prudential RideLondon 100
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Challenge Events There are plenty of challenge events to get involved in, from 5ks to sky dives 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 beat leprosy.
On 4th August, Prudential RideLondon 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. Why not take part and enjoy cycling through the Surry Hills, with a spectacular finish on The Mall in Central London. We are aiming to raise over £9,000 at the event. Register to take part by visiting our website www.lepra.org.uk/Event/ prudential-ridelondon-100. This event is perfect for both club and recreational cyclists. Get involved today.
Socks and Sandals We are proud to launch our first official Socks and Sandals week from 13th – 17th May. The week encouraged 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 see all of our supporter’s pictures by following our social media pages, or visit our blog at www.lepra.og.uk/news
Amazon Smile
Savoo
Amazon has recently introduced Amazon Smile, donating 0.5% of the purchase price to your chosen charity. This is a simple way to make a huge difference to the lives of those affected by leprosy, all you need to do is add Lepra as your chosen charity on Amazon.
Our staff and trustees have raised over £100 by using the Savoo search engine and selecting Lepra as their chosen charity. Why not join us and use Savoo, choosing Lepra as your chosen charity. For further details visit www.lepra.org.uk/ donate-online-shopping
Naturally Supernatural We will be attending the Naturally Supernatural event between 27th July - 1st August at the Stafford Showground. Naturally Supernatural is a Soul Survivor event, where attendees spend time in God’s presence and can attend workshops and talks to equip themselves to lead Spirit-led lives. Come along and say hello to our fantastic team.
Ladies Ascot Day at Greenwoods We are delighted to be the chosen charity at Ladies Ascot Day at Greenwoods Hotel and Spa on 20th June. The event will help raise awareness of leprosy and the work Lepra does. To find out more information or to purchase a ticket, call Greenwoods event team on 01277 829990. Tickets cost £69 per person and the event takes place from 11.30am - 6pm.
Your present their future Share your birthday or special occasion with us to help someone affected by leprosy or LF. You can easily set up a Facebook fundraiser to share with friends and family, or they can donate directly to Lepra.
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LepraNews
Sajeran’s Story Sajeran is 60 and the widow of Abdul Gafur, living in Tailaner par village in Kurigram District. She was first affected by leprosy 20 years ago.
She visited different local doctors and spent a lot of money on her condition, but she didn’t improve at all. At one stage, her treatment was stopped and Sajeran was left with claw hands, affected feet and ulcerations. Consequently, she was driven out from her home by her husband. Some villagers took her to the Upazila Health Clinic in Nageswari to see the Medical Officer and the Medical Officer finally referred her to Rangpur Dinajpur Rural Service (RDRS) leprosy clinic.
life with hardships due to her clawed hands and ulcers on her feet.
Sajeran was finally diagnosed as a multibacillary leprosy patient and started on multi drug treatment. Her physical condition gradually improved because of the treatment and the intensive care of RDRS staff, and she was declared cured from leprosy. By this time, her husband had passed away and Sajeran endured a widowed
She was invited to an ulcer care training session organised by the Reaching the Unreached project, where she was trained on ulcer care. She now practices this at home and her ulcer is cured. She is grateful for the project’s support and said: “I pray for you all”.
After river erosion destroyed her home, Sajeran moved in with her widowed daughter in the village of Sanjuar vita in Kurigram District, living a destitute life. Her daughter worked as a maidservant and looked after her mother on a meagre income. Sajeran was still suffering particularly badly from an ulcer in her left leg and could not perform daily chores smoothly.
Spring 2019
New Face project update The New Face Project was launched earlier this year by Lepra Trustee Professor Lockwood, Alex Kumar, doctor and photographer and Saba Lamberts, a doctor working in Ethiopia, and was funded by a social engagement grant from London School of Hygiene and Tropical Medicine. The project encouraged a more positive image of leprosy in which patients are not defined by their disease. Traditionally, leprosy has been characterised by pictures of severely disabled people, often showcasing the extreme aspects of the disease. The project was covered by The Lancet in February 2019, showcasing a more positive image of leprosy https://bit.ly/2uX6g1n. The New Face Project is now moving into its next phase, and we are delighted that our projects in India have been chosen to be photographed, helping us to change the negative imagery currently associated with leprosy. Copyright © 2019 Dr Alexander Kumar / Global Health Creative
Following the success of the £1 from you, we get two appeal last year, which raised just over £130,000, we are delighted to be relaunching the appeal in September 2019. The appeal will run from 16th September to 27th October during which we hope to raise a minimum of £140,000
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)