World Leprosy Day 2014 - shining a light on the ‘hidden’ disease

A young woman affected by leprosy in Myanmar (Burma) is benefiting from a new mobile prostheses clinic.
Credit: Leprosy Mission

This Sunday, 26 January, is World Leprosy Day 2014. Few people might take notice; few might even know that leprosy still exits today. But it does.

For me, World Leprosy Day always has a special resonance because when I was very young – just after high school – I worked in a leprosy centre for a few months. It was in Polambakkam in beautiful Tamil Nadu in the south of India.  At the time, the multidrug therapy hadn’t been developed yet and the stigma of the disease was so strong that very few Indian medics wanted to work there, so volunteers like me were brought in to help clean infected wounds and bandage damaged limbs.

Leprosy has now been curable for the past 25 years or so, but is still a global problem, affecting more than 15 million people worldwide  (including 100 in the UK), and each year, at least a quarter of a million new cases are detected - that is almost one person diagnosed every two minutes (World Health Organization). Over half of all newly-reported cases occur in India. And the stigma is still as damaging as it was when I was young.

On World Leprosy Day, the Leprosy Mission England and Wales, an international organization working to eradicate the causes and consequences of the disease, wants to “shine a light on this hidden disease.” Here is their message:

• Did you know there are still leprosy colonies in the world today where people are ‘sent’ or ‘seek refuge’?  There are 850 in India.

• Did you know that stigma surrounding leprosy in many parts of the world today is akin to what it was during Biblical times?  Even beggars begging for their own survival will often shun a leprosy-affected person.

• Did you know that leprosy is completely curable with a simple combination of antibiotics?  Yet 85 per cent of people in Delhi, India - still believe there is no cure.

We’re confident that leprosy rates would be slashed across the world today were it not still shrouded in age-old stigma.  Three million people would not be living with irreversible disabilities as a result of late treatment of the disease.

What other disease sees someone outcast from their family, sacked from their job, thrown off public transport and pushed to the very fringes of society?

The tragedy is when leprosy is ‘hidden’. It damages and disables, slowly destroying each aspect of a person’s life.  If it wasn’t for stigma and misunderstandings surrounding leprosy then people would seek treatment and all healthcare professionals would recognise its symptoms.

Leprosy is a disease.  Those affected deserve dignity not discrimination. Please spread the word.

For more information, click here.

World Leprosy Day 2013: breaking the cycle of poverty and stigma

Evelina Juba, Leprosy Village, South Sudan

This Sunday is World Leprosy Day 2013, but few people are likely to take notice. Few might even know that leprosy still exists today.  But it does: it affects more than 15 million people across the world and each year nearly a quarter of a million new cases are detected: that is almost one person diagnosed every two minutes. Over half of all newly-reported cases occur in India. 

It might be the oldest disease known to mankind, but it is very much a disease of our time - a disease of poverty caused by a bacillus called Mycobacterium Leprae (a distant relative of the TB bacillus). Most people are naturally immune and the disease is easily cured with multi-drug therapy, but the majority of people affected live in developing countries where resources are scarce and poverty is widespread.

South Sudan is a case in point. Unofficial data points to the UN’s newest member state as having the world’s highest prevalence of leprosy.  After decades of civil war, South Sudan became an independent country in 2011.  But nearly two years after its independence, its people face a daily struggle for survival with severe food shortages. Recent field trips made by The Leprosy Mission England and Wales revealed a woeful lack of healthcare available to those affected by this devastating disease.

The charity’s head of programmes coordination, Sian Arulanantham, said: “I witnessed such abject poverty in South Sudan and there is a real humanitarian crisis within this new nation.  Leprosy is thriving in the squalid conditions in which people are forced to live and there are insubstantial health services available to diagnosis and treat what becomes an extremely debilitating disease.”  The charity is working with the government of South Sudan to try to alleviate some of the suffering people with leprosy have to endure.

While leprosy is not very contagious, the fear and stigma associated with it are – and that’s what makes it such a difficult disease to eradicate. Bible-old stigma and discrimination are still prevalent today and see entire families having their job opportunities, education, marriage prospects and dreams shattered.

Fear fuels a vicious circle which begins with people hiding the first telltale patches on their skin in order to avoid being shunned by their families and driven to the fringes of society. Since 1982, leprosy is easily cured with a simple course of antibiotics, but if left untreated, it can cause irreversible disabilities. The antibiotics can halt the progression of the disease, but cannot undo the damage.  Leprosy causes nerve problems, which can lead to a loss of sensation in the hands and feet, meaning everyday activities are fraught with danger.  Burns go unrecognized and stones in shoes unnoticed, causing ulcers and bone resorption.  The resulting disability can lead to the amputation of limbs.  Leprosy also damages nerves in the face causing problems with blinking, eventually leading to blindness.

On World Leprosy Day 2013, The Leprosy Mission of England and Wales is urging government and people to “concentrate on breaking the cycle of poverty which, along with stigma, sees leprosy remain a 21^st century disease.” 

Over 100 countries mark World Leprosy Day

Tomorrow (30 January 2011) is World Leprosy Day – a day to remember that this biblical-times disease is still with us and millions of people across the word still suffer from it.  To mark the day, over 100 countries will undertake activities and advocacy to raise awareness of leprosy and to ensure that this neglected tropical disease is not ignored.

When I was very young – just after high school – I worked in a leprosy centre in Polambakam, Tamil Nadu, India, for a few months.  At the time, the multidrug therapy hadn’t been developed yet and the stigma of the disease was so strong that very few Indian medics wanted to work there.

Leprosy has now been curable for the past 25 years, but is still a global problem, affecting more than 15 million people worldwide  (including 100 in the UK), and each year, nearly a quarter of a million new cases are detected - that is almost one person diagnosed every two minutes. Over half of all newly-reported cases of leprosy occur in India.

And the stigma of the disease is still as present as it was when I was young and often more damaging than the disease itself. Many countries around the world, including India, China and even England, still have discriminatory policies that mirror the social exclusion people with leprosy face daily. Too often, people with leprosy cannot get married, lose their jobs, are rejected by their families and communities, and their children are not allowed to go to school.

 “I can endure losing fingers and toes, but not the rejection of my family nor my family being rejected by society,” said one sufferer at Kothara hospital in India, run by the Leprosy Mission England & Wales (TLMEW).

On World Leprosy Day, schools, groups and churches will organize activities and events focused on advocacy, education and fundraising for leprosy. In the countries where leprosy exists, the day will be used to lobby governments and to publicly campaign to dispel some of the myths about the disease: that it is highly contagious and not curable. Since 1982 leprosy has been curable with a combination of antibiotics called multidrug therapy.

Leprosy is a mildly infectious disease, which attacks the nerves. If treated early there will be no long-term damage, but if treatment is delayed the person may develop permanent nerve damage and disability.

The Leprosy Mission England & Wales provides a free resource pack to help people mark the day.