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:
ZERO TRANSMISSION –
ZERO DISABILITY – ZERO DISCRIMINATION
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repealed or stopped - 157 laws across 29 countries actively discriminate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.
Mahendra
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| 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.
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| In 2018 Mahendra had plastic surgery to his hand |
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.
