Friday, 25 January 2019

Thought for World Leprosy Day - The Leprosy Mission

by Katherine Jones, Media and Communication Officer, The Leprosy Mission England and Wales.

World Leprosy Day is commemorated every year on the last Sunday in January. The day was chosen to coincide with the anniversary of Mahatma Gandhi's death in 1948. Gandhi was himself a champion of people affected by leprosy.

Leprosy is just one of many NTDs that still threaten millions of people worldwide today. Like other NTDs, it is usually the poorest and most marginalised who are most at risk. The Leprosy Mission is working with other NTD-focused organisations, including ILEP, World Health Organization, Novartis Foundation and Leprosy People’s Organisations as part of the Global Partnership for Zero Leprosy, a consortium striving to end this ancient disease.  The focus is around 3 main goals:


That leprosy transmission is stopped - over 200,000 new cases of leprosy are diagnosed worldwide every year, that is one person newly diagnosed every two minutes.

That the lifelong disabilities caused by the late detection of leprosy are prevented - over six million people worldwide suffer from serious physical impairments or mental illness caused by leprosy, many of whom require surgery or rehabilitation.

That the laws and practices that actively discriminate against people affected by leprosy are repealed or stopped - 157 laws across 29 countries actively discriminate against people affected by leprosy. Read more about leprosy related stigma and discrimination here from ILEP (the International Federation of Anti-leprosy Federation).

Within each of the Three Zeros, critical concerns need to be addressed if leprosy is to be defeated in our lifetime. 

We need investment in research to develop a cost effective early diagnostic test and to train both public and private sector health workers to recognise and treat leprosy. Government commitment to active case detection and early diagnosis is essential to stop the transmission of the disease. This must be achieved, ideally using cross NTD approaches, if we are to prevent impairments and lifelong disabilities - particularly in children.     

Recent data from the World Health Organization, shows that the proportion of children newly diagnosed with leprosy (out of the total of all people newly diagnosed) is a shocking 9%. This indicates that the transmission of infection is recent and ongoing in many poor communities. Yet it seems likely that the percentage is significantly under reported due to limited active case detection, and, that Government data collected for leprosy in children is based on a child age of under 15 years and not 18 years as per the UN Convention on the Rights of the Child.  We are failing our children.  

This World Leprosy Day, The Leprosy Mission calls on Governments, NGOs, Alice Cruz (The UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy), the World Health Organization, the Global Partnership for Zero Leprosy and ILEP members to address this under-reporting of children affected by leprosy and ensure the accurate reporting of child cases (under 18 years). Only when we have the correct data will programmes be able to assess the true situation and ensure services reach children most at risk; children like Mahendra.


In 2015 Mahendra's leg was amputated when he was 15
Mahendra is from Janakpur in the south-eastern Terai region of Nepal. Like most of the Nepalese population, his family farm for a living.

At 10 years’ old, he developed cracked, dry skin on his feet and lost the sensation in his toes. The cracks gradually enlarged, became infected and developed into ulcers which did not heal. His family took him to over 20 private hospitals to try to treat the condition, but the diagnoses were wrong, and the treatments didn’t work. Meanwhile his ulcers worsened, and he developed clawed fingers. By 14 years’ old, he had already lost several toes. He finally received a diagnosis of leprosy at Lalgadh hospital.

Upon receiving the diagnosis, Mahendra was rejected by his father and told not to return home from Lalgadh. He said, “my father hated me. He thought he would catch leprosy from me. He didn’t want me around.”  So, he stayed at Lalgadh where he was treated with multi-drug therapy. Although treated for the disease, the lack of sensation in his feet worsened and he continued to injure himself. At the age of 15, he suffered a severe fracture and was referred to The Leprosy Mission’s Anandaban hospital (for more information see Heal Nepal).

Mahendra was assessed by the doctors at Anandaban and told that the injury and tissue infection was too severe to be repaired or treated. He needed an amputation below the knee. 

In 2018 Mahendra had plastic surgery to his hand
After several months, he was ready to return home with a prosthetic limb made at the hospital. He hoped that his father would accept him, but he didn’t think it was likely.

Despite repeated phone calls, Mahindra’s father will not permit him to return home.

When Mahendra leaves Anandaban Leprosy Hospital, Neal, he will move to a leprosy community outside Kathmandu. However, his damaged hands may make it difficult for him to earn a living.  

Leprosy is classified as a Neglected Tropical Disease by the World Health Organization.
Leprosy is a mildly infectious, chronic disease caused by a slowly growing bacterium, Mycobacterium leprae. It can be completely cured by antibiotics known as multidrug therapy or MDT. If left untreated, leprosy causes immense physical suffering and disability, such as nerve damage, blindness and disfigurement of the face and limbs. Its characteristic lack of sensation can lead to injury and loss of fingers, toes or even limbs. The impairments, social stigma and discrimination often mean those affected experience poor mental health.

Interventions are wide-ranging and holistic, not just addressing the disease itself but also ensuring social inclusion and quality of life.  As well as medical work, areas of activity include counselling, housing, water, sanitation, education, employment, advocacy and empowerment.

The Leprosy Mission (TLM) is an international Christian development organisation striving to defeat leprosy and transform lives. It serves people affected by leprosy, other neglected tropical diseases and disability.  The England and Wales office currently focuses its work in 10 countries where leprosy remains both a chronic disease and a social challenge: Bangladesh, Ethiopia, India, Mozambique, Myanmar, Nepal, Niger, Nigeria, Sri Lanka and Sudan.

TLM works with organisations that are specialised in other NTDs to develop joint approaches to disease and disability prevention. NTDs which can be treated easily alongside leprosy include: lymphatic filariasis, trachoma and Buruli ulcer.