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.”