Welcome to the... Spring Lepra News!

Welcome to the first Lepra News of 2023!

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.

World Leprosy Day 2023

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

Shining a Light for Elin

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.