Lepra News Summer 2020

Summer 2020

lepra.org.uk

In this issue COVID-19 Emergency how we are helping Lepra’s Museum

Patron: Her Royal Highness Her Majesty The Queen Vice President: His Royal Highness The Duke of Gloucester KG GCVO

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LepraNews

Summer 2020

Life Changing Shoes!

In these rather unusual times, when so many UK schools have been forced to close, Lepra is working to give something back to the wonderful schools and children that so generously support our work.

Farewell Ashim Ashim Chowla, Chief Executive of LEPRA India officially finished his tenure on the 8th of March 2020. In his role for over six years, Ashim was instrumental in raising the profile of leprosy across India.

He grew up in West Bengal, an eastern state in India and spent sixteen years there. At just eight years of age, Ashim discovered he had leprosy. He noticed a discoloured patch of skin, or his ‘magic patch’ as he often refers to it. While he says leprosy did not affect him the way it affects others and he was treated quickly, it inspired him to work in the NGO sector and actively try to change people’s lives.

Ashim’s career has spanned over 25 years, and includes work with UNICEF, DFID and a number of grassroots NGOs. It was joining LEPRA that helped him realise the difficulties he could have faced, had he not been cured at such an early stage.

“When I realised what might have been, it was like finding out a bridge you crossed earlier in the day had collapsed while people were using it, just as you had earlier.”

Geoff Prescott, Chief Executive of Lepra, called Ashim a visionary.

“We will surely miss Ashim and his hard work and dedication. Under his leadership, LEPRA has grown and flourished. He is a champion of the people and changed so many lives.”

We wish Ashim every success in his next role and he will be sadly missed.

Whilst children are encouraged to study at home, we invite families to take part in our Life Changing Shoe Challenge! One way that Lepra supports people affected by leprosy is by creating customised footwear for people who have suffered nerve damage or injury to their feet as a result of loss of sensation from leprosy. These sandals enable people to not only walk, but return to school, work and lead a more independent way of life. To learn more about this element of our work, we are inviting children to find their favourite pair of shoes and create a picture to send to us.

Be as imaginative as possible, whether it’s a colourful, textured, sketched or collaged piece of artwork, get creative and have fun! If your child would like to take part, please send a photo of their finished artwork to lepra@lepra.org.uk with your full name and child’s first name and age. Drawings will be uploaded and displayed in our online gallery and a certificate will be awarded to the most creative entries every month. Please visit lepra.org.uk for more details.

Despite the challenges presented by COVID-19, Lepra would be delighted to work with your school remotely. We can offer real time presentations on the work of Lepra via Microsoft Teams, Zoom, or Skype, or share pre-recorded material that can be delivered by your own staff. If you would like to find out more, or discuss specific ways we can work together to raise awareness and to raise vital funds, please visit our website, or email us on lepra@lepra.org.uk.

In this issue Page 3

Lepra’s Museum

Page 4 & 5

COVID-19 emergency how we are helping

Page 6 & 7

Fundraising and events

Page 8

Zaibun’s story

Join in the conversation on social media: LepraUK

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LepraUK

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Front cover photograph supplied by Tom Bradley

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Lepra’s Museum A temporary exhibition was established in 2010 by Irene Allen, a former member of Lepra staff.

Various items were displayed here, including historical artefacts and photographs dating back to 1924.

From the remains of unused shelving and cabinets, the museum at Lepra was born. It had its official opening in 2017, by the great niece of one of the founders of Lepra, Sir Frank Willington Carter.

Ikoli Harcourt Whyte & his wife

The museum serves as a vital link to the past, bringing with it a sense of continuity, history and above all, hope. It offers an insight into the important work that has been carried out over the decades, from Lepra’s very inception right up until the present day. The museum not only chronicles the research and development carried out by Lepra through the decades, including the creation of settlements and research centres, but also highlights the most important figures from Lepra’s past, including local workers who made the work of our overseas doctors and researchers possible.

It is of enormous importance to Lepra, as it gives us a clear sense of how we sit in the Lepra timeline; the early struggles and gradual changes, the slow developments and wonderful achievements, even a cure!

We are currently working towards official accreditation for our museum and are focused on developing it further, including profiling more of our modern successes and our expanded partnerships with other organisations and governments. In more recent times, we have begun showcasing photography at the museum, including our New Faces of Leprosy exhibition which has travelled to the House of Lords.

These kinds of exhibitions will become more commonplace as the museum expands and develops, benefiting both the public and Lepra by raising awareness of leprosy and assisting us in our effort to raise funds for our various projects.

Currently, Lepra works in India, Bangladesh, Mozambique and Zimbabwe but this was not always the case. Lepra has worked in varying capacities across the world, assisting in the development of leprosy management programmes. Our museum reflects this rich, complex history by showcasing stories from other countries, like the story of Ikoli Harcourt Whyte, a Nigerian composer who suffered from leprosy.

changed the course of his life.

Treating someone with leprosy always has and always will be, only one, small part of the journey for Lepra. We work holistically with those affected by leprosy, enabling them to achieve their potential with medical, psychological and financial support.

Stories, like Ikoli’s, bring to life people from long ago, who still have an impact today and highlight the legacy of Lepra. Our aim for the future is to undertake further displays highlighting women who work in the field, the doctors who researched and improved the drugs, and those who lived with the disease and helped others despite this. The museum is an important part of our history and will continue to remind us where we have come from and the good work we must continue to do.

Ikoli's choir, all from the leprosy settlement, was blocked from performing centre stage on Nigerian Independence Day, 1958 because a government official found leprosy distasteful. Ikoli developed a closer relationship with his doctor, a British reverend named Frank Davey, and ultimately overcame leprosy, which forever Reverend Frank Davey & his wife

LEPRA Museum, Colchester

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LepraNews

Summer 2020

COVID-19 emergency India The ongoing COVID-19 pandemic has been devastating the world over, but particularly in India, where they are already struggling with fragile health systems, systemic, widespread poverty and the second largest population in the world, with 1.35 billion people.

In April, we reached out to our supporters for help during this difficult time and we have raised an incredible £87,637 so far. This enabled us to purchase a vital PCR machine for our Blue Peter Public Health and Research Centre (BPHRC) in Hyderabad, which allows for the study of and testing for COVID-19 and also leprosy. These machines are costly to purchase and expensive to run and your donations will go a long way to helping us. LEPRA has recently achieved official government accreditation, meaning that we will now be able to begin testing for COVID-19 on a largescale and further our understanding of the disease. This will greatly benefit those in vulnerable categories, including frontline healthcare workers and marginalised people at greater risk of contracting the disease in poor living conditions.

The pandemic has created an even steeper divide for those with leprosy within Indian society. Many thousands of people that suffer from leprosy live in crowded conditions with no access to clean water, proper nutrition or adequate medical facilities.

Diseases like leprosy, and indeed COVID-19, thrive in these environments and it has challenged our team in India immensely across many key areas, including gaining access to people affected by leprosy during lockdown, supplying appropriate medications such as MDT and steroids and providing food supplies for those in dire need.

To date, LEPRA, along with support from Azim Premji Philanthropic Initiatives (APPI), has reached 2,400 people by helping them secure emergency food and hygiene packs. Each household that LEPRA has assisted contains a person affected by leprosy, but also in some cases, migrant workers from other states and districts who are forced to stay in slums and work in nearby factories. Jayaram Parasa, Head of Programmes for LEPRA in India says: “COVID-19 is an unexpected situation which halted everyone’s lives, including those with leprosy.

Most people are unable to go out and earn their livelihood. This reduces the options available to individuals regarding accessing healthy, nutritious food. Some are starving.”

Sudhakar, a painter, is one of the beneficiaries of LEPRA’s food programme, in conjunction with APPI. He says: “I have no opportunity to work because of COVID-19. I am also a migrant worker, so I don’t have a ration card to access the government food scheme. I have no help. The ration kit supplied by LEPRA has helped me stay healthy and alive.”

It is not just food shortages that pose a serious threat, but also a lack of MDT and other life changing medications for those affected by leprosy.

Rajni Kant Singh, LEPRA’s state coordinator for Bihar, the Indian state that regularly ranks lowest for public health conditions across India, says that MDT supply remains a serious issue during these epidemic conditions.

“There is a supply chain for medications and health facilities in order to prioritise stock levels during COVID-19. LEPRA is managing and monitoring this particular chain at the request of the Indian government, but it is not always simple or easy.”

During the crisis, the numbers of people attending outpatient clinics and seeking treatment for leprosy has decreased and the need for community champions and rural outreach programmes has increased. These programmes are only viable thanks to funding we receive from our generous supporters.

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How we are helping Abu’s situation is not uncommon in Bangladesh during the COVID-19 crisis. Families have been forced into dire situations, dealing with chronic illness’ like leprosy, the risk of catching COVID-19 and the very real economic threat brought about by a severe countrywide lockdown. Government support has failed to reach the poorest and most vulnerable of people, so where possible, Lepra has bridged that gap and continues to look after the welfare of those in marginalised communities.

Bangladesh The COVID-19 pandemic has also had a serious and far reaching impact on our work in Bangladesh.

There have been over 162,000 cases of COVID-19 diagnosed at the time of print. Despite this, the country is slowly reopening and our staff are returning to office based work wherever it is safe to do so. It has been a difficult few months, with similar MDT supply issues to India in the community and a growing need to educate people about their ongoing leprosy treatment and appropriate preventative measures against COVID-19. People like Abu, who relies on Lepra for medication and support, has had his life altered drastically by COVID-19. After suffering leprosy reactions, a rare side effect that can cause debilitating pain, Abu was bedbound and required help from Lepra’s Community Champions. He received the necessary drugs, but the pandemic began and he worried that his treatment would be disrupted. At the same time, due to the government lockdown, Abu lost his job and couldn’t afford food or basic necessities. His family were at risk of falling into serious poverty, but Lepra intervened. They provided him with food, support, medication and knowledge surrounding COVID-19 prevention.

The COVID-19 outbreak, combined with the endemic issue of leprosy in both of these countries, will continue to challenge the health systems even when the pandemic is under control. Now, more than ever, our support on the ground is needed and we are rapidly developing the way in which we carry out our programmes, which includes telephone counselling services and increasing the amount of MDT packs so as to minimise visits to centres, thus reducing the risk of potential COVID-19 infection. All of these steps will help us develop and evolve the way in which we treat those affected by leprosy in the future and increase our understanding of community needs in time of crisis. Your help has never been more crucial. By working together, our combined efforts can go even further.

You can support our teams in their vital health intervention work by: - making a donation online with a credit card, debit card, or PayPal at www.lepra.org.uk - calling us at 01206 216700 or 07410 090409 - texting LEPRA followed by your donation amount to 70500 - sending a cheque to Lepra, 28 Middleborough, Colchester, Essex, CO1 1TG. - using a CAF account, or by donating directly via a bank transfer, please ask us for details

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LepraNews

Summer 2020

Fundraising stories

We have recently launched a new website!

Visit us at

Socks and Sandals Socks and Sandals season is upon us once more! We are asking people to participate in our Six for Socks and Sandals challenge to raise much needed funds for those affected by leprosy. Grab a pair of your wackiest socks and sandals or shoes, go for a walk and donate £6 (the cost of a pair of protective sandals). Choose your distance and when to go, knowing your exciting fashion combo will help raise awareness of the important footwear projects we offer for disability management.

Why Socks and Sandals? One of the devastating side effects of leprosy and lymphatic filariasis is the damage it can cause to the feet, making walking extremely difficult if not impossible. As part of our disability management programme, we provide custom made protective footwear to help people walk comfortably and without fear of injury. Each pair of sandals costs £6 to make, and last year we distributed more than 30,000 pairs. Help us to provide even more by taking part in a Socks & Sandals Walk today. Email us for information at events@lepra.org.uk or tag us in your social media!

Baillie Gifford support Lepra Our corporate partnerships remain an important part of Lepra and many of our projects that directly impact the lives of those affected by leprosy and lymphatic filariasis are helped greatly by these strong and continued relationships.

Baillie Gifford has been a corporate partner of Lepra since the inception of our Mental Motivator project in Bangladesh in 2019. Their support helped to launch the project, which aims to increase mental health support to those affected by leprosy.

During the COVID-19 crisis, the work in our focus countries is under threat. Our teams are dealing with countrywide lockdowns, restricted movements and supply shortages.

The continued support of Baillie Gifford allows us to assist our teams, ensuring that those under our care receive the life changing medication they need, along with social, economic and psychological support. We are actively engaged with local governments to participate in the research of COVID-19 and we continue to fundraise and work with our corporate partners towards this goal.

If you, or your organisation, would like to join Lepra and our current corporate partners in changing the lives of those affected by leprosy, please email our Community and Corporate Fundraising Manager Abi: AbiW@lepra.org.uk.

www.lepra.org.uk and learn more about our wonderful work and how you can get involved.

Schools fundraising One of our fundraisers visited Colchester County High School for Girls in March. Following an assembly about our work, students at the school had one month to raise awareness and funds for Lepra, with a fun Zumba workout at the end of the month as their final collective fundraising activity.

Students took part in a variety of activities in the local area, including a pier-to-pier walk, litter picking, a mud run and craft making. Collectively, the students raised an incredible sum – just over £5,100. We are exceptionally grateful to all at Colchester County High School for Girls.

The staff and pupils of Millais Secondary School for Girls in Sussex also managed to fundraise a fantastic £3,977 for Lepra’s work. They raised money through a sponsored workout and enjoyed the fun of Zumba. We thank everyone who got involved. Your dedication to Lepra will enable us to help those affected by leprosy and provide life changing services for those in need.

Rotary partnership The nascent collaboration between Rotary in the UK, India and Lepra has been revived despite the interruption of COVID-19. The plan is to undertake active case finding (ACF) combined with wide public information and consciousness-raising messages in Delhi and possibly the surrounding states. The rotary partnership offers significant opportunities to make links in the UK, and will increase our advocacy and reach in India. We will also hear in the coming weeks whether the cost of this programme will be matched either 50% or 100% by Rotaries’ HQ in the USA. If you are a member of a Rotary club in Great Britain and Ireland, we want to hear from you! Our fundraising team will be delighted to host virtual talks with members of your club, explaining the work we do, how you can help and our partnership with Rotary at various levels. Please contact lepra@lepra.org.uk for more information or contact us on 01206 216700.

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Virtual Quiz

Upcoming events London Marathon Sadly, like most events around the world, the London Marathon 2020 was postponed due to the COVID-19 pandemic.

Currently, there are plans to hold the marathon in October and our runners will still get the chance to fundraise for Team Lepra. In addition to this, we are currently advertising our 2021 marathon places and anyone interested should contact LucyF@lepra.org.uk.

Edinburgh to St Andrews The Lepra Edinburgh to St Andrews bike ride is usually a firm calendar fixture each year, but this year we have developed a counterpart challenge that you can participate in from home; the Virtual Lepra Edinburgh to St Andrews bike ride. To take part, all you have to do sign up or register your team at events@lepra.org.uk and challenge yourself to cycle 68 miles, your way, from the comfort of your own locality. Do it on your own, or tag team your family members in, the choice is yours. You’ll have a fundraising target of £68, £1 for every mile.

Once the 68 miles is complete, you and your team are virtual E to A Finishers, with a digital certificate to prove it! Your fundraising will make a huge difference to someone’s life. £68 can pay for a child to receive support through their leprosy diagnosis, enabling them to remain in school. Some of our supporters have already taken part:

Lepra has teamed up with Virtual Quiz Events, an online quiz website where people can enjoy a traditional table quiz from the comfort of their own homes! We will be hosting these quizzes online every week. At just £3 per entry, it o ers a cheap alternative for your general knowledge aficionados.All you have to do is register online at www.virtualquizevents.co.uk, choose Lepra’s quiz, pay your fee and take part! The quiz will run weekly, every Wednesday at 11:15 AM.

Mount Everest climb Do you like the sound of reaching 8,848m above sea level, the highest point on Earth, at an altitude where humans are not designed to survive and where aeroplanes cruise? That sounds very dangerous, expensive and difficult to do in line with social distancing, right? But we have a solution – a big challenge for Isolation 2020. Can you climb the equivalent of Mount Everest in 12 weeks? In this challenge, you can go out to the hills on your daily exercise or simply tackle the stairs a couple of times every day. If you achieve 8,848m of elevation gain in 12 weeks, this well-earned medal can be yours! You can sign up to the challenge here, https://www.lepra.org.uk/events, and get started!

At just ÂŁ13, this is a great way to challenge yourself physically and mentally while also raising money for a fantastic cause. Once you have completed the challenge, send a screenshot of your fitness tracker detailing the distance you have covered to virtual@runforcharity.com and we will post you your very own medal!

Philip Brand Philip cycled a total of 73 miles around the Scottish borders and raised a fantastic ÂŁ185.

Alex Graham Alex Graham cycled 71 miles around the county of Cheshire and donated ÂŁ68. Alex said ‘I have previously taken part many times for this worthy cause, and hope next year things will be back to normal.’ We’d like to say a big thank you to everyone who has taken part so far! This challenge will run for the rest of the year, and we can’t wait to see more of you take part.

Virtual Runs – join Team Lepra Throughout the year, Lepra is hosting various online running events through Run for Charity. We have a 5k, 10k, half marathon and full marathon for you to test your stamina and raise money for a great cause.

To get involved, all you need to do is register at www.runforcharity.com/charity/lepra, pick your race and go! We ask that you pledge a fundraising donation, but you can choose your own speed and location. Run from the comfort of your own home with a treadmill or hit the forest trails alone, or with people from your household.

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LepraNews

Summer 2020

Zaibun’s Story

Leprosy Review Website update In May, we launched a new website for the only peer reviewed academic leprosy journal, www.leprosyreview.org. The website is a step towards modernising the journal, which in one form or another, has been in circulation since 1928. It includes articles on leprosy, and associated illness’, from specialists all across the world and continues to keep leprosy at the forefront of scientific research.

Zaibun noticed a small blister on her right hand and by the next morning, her body was covered in painful nodules. Her skin blistered and swelled and she had a high fever. Her entire face was covered in the nodules and she was very frightened. In Osmania hospital in Hyderabad, Zaibun was diagnosed with leprosy and she was afraid she was going to die.

Her husband was supportive and would often take time off work to take her to the hospital.

Zaibun was unwell. She was feverish constantly and had very little appetite.

After twelve months of intensive multi drug therapy, Zaibun was referred to Lepra’s Nallakunta Leprosy Referral Centre in Hyderabad. She wanted help for the painful nodules on her face.

Lepra staff reassured her and prescribed her steroids.

Gradually, her symptoms reduced and she began to feel more like herself.

She says, “Lepra took very good care of me. If I was to say to someone

newly affected by leprosy, I’d tell them not to be afraid. Take the medication and you will be all right. Look at me, I’ve been through this, and I’m very happy now!�

We are always seeking out new authors and researchers, so please email us on lepra@lepra.org.uk if you have any queries relating to submission or advice.

Despite the COVID-19 emergency, we are still actively helping people like Zaibun. However, we need your help to continue to do this.

Referral centres, like Nallakunta where Zaibun was diagnosed, are often expensive to run and we need your donations to keep them open. For ÂŁ26 per month, we could provide 12 clinics with vital soaking and dressing materials for a year.

This could help someone like Zaibun stave o deadly infections and help manage their ulcers and nodules. We need your help to change their lives.

You can support our teams in their vital health intervention work by: - making a donation online with a credit card, debit card, or PayPal at www.lepra.org.uk

- sending a cheque to Lepra, 28 Middleborough, Colchester, Essex, CO1 1TG.

- calling us at 01206 216700 or 07410 090409

- using a CAF account, or by donating directly via a bank transfer, please ask us for details

- texting LEPRA followed by your donation amount to 70500

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 Royal Highness Her Majesty The Queen Vice President: His Royal Highness The Duke of Gloucester KG GCVO Registered Charity number 213251 (England and Wales) SCO39715 (Scotland)