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Leprosy has been feared in almost every culture for hundreds of years, in view of the considerable deformities and disabilities it can bring, the absence of any effective treatment (until the 1940s) and mystery surrounding its causes. People showing signs of leprosy have traditionally been shunned, as community members have feared infection or contagion.
Leprosy is now known to be a chronic, infectious disease of slow onset. It essentially affects peripheral nerves, and can now be medically cured simply and cheaply through multi-drug therapy (MDT). Eradication of the disease worldwide is now a realistic goal. However, the stigma associated with leprosy remains a major problem. Those affected by leprosy are marginalised, suffering continual psychological, as well as physical, distress.
 Without the benefits of pain, those affected by leprosy have difficulty in the daily routines of life and are unprotected from bodily damage that ordinarily would be avoided. Even when wounds are apparent, the demands of life for those trapped in poverty deny them opportunities to avoid infection or further injury. Infection thus tends to lead to deformity and ulceration; and these lead to ostracism - resulting in further social and psychological damage. Escalating marginalisation increases the probability of more physical damage, and thus, an apparently inexorable vortex of physical and social disaster accelerates. Hence, leprosy stigma increases social and economic disadvantage.
In the Hindu culture of Nepal, leprosy is perceived in many village communities as a punishment for misdeeds in a former life. Therefore, villagers do not want to be associated with a person affected by leprosy in any way, even if the person affected is a spouse or family member. The fears and misconceptions surrounding leprosy mean that those with early symptoms, in particular those already disabled, are reluctant to come forward for diagnosis, making effective treatment more difficult. Higher rates of disability, and greater delays in starting treatment, are associated with high levels of stigma. A diagnosis of leprosy in a family can mean the loss of work, divorce or the end of marriage prospects.
NLT carries out its aims and objectives through programmes in five main areas.
1. Leprosy Services
NLT's Leprosy Services Centre at Lalgadh, southeast Nepal, serves the surrounding districts which have the highest prevalency of leprosy in Nepal. It provides:
- examination and diagnostic services for a range of leprosy-related and general medical conditions;
- in-patient and out-patient treatment services, including multi-drug therapy (MDT); treatment of reaction, neuritis and complications; reconstructive surgery; POID; foot-care; and physiotherapy;
- recording, reporting and following-up those people who default from treatment.
2. Empowerment
NLT aims to empower those affected by leprosy to re-enter society and function effectively within it, equipped with new skills. The Self-Care Training Centre provides residential training to equip individuals practically and psychologically to participate in family and community life again with everyday living and working conditions. Self-help groups are established to enable those re-adjusting to everyday life to meet challenges together. As they begin to play significant roles in their communities, their status is enhanced, helping reduce the stigma of leprosy.
3. Capacity Building
NLT's work at Lalgadh supports the government’s Leprosy Control Programme. Part of this work involves building up the capacity of 'grassroots' health workers and other influential community groups and leaders, for more effective leprosy control. A purpose-built training centre at Lalgadh facilitates this. One feature of this programme is the mobilisation and training of people affected by leprosy to become important contributors themselves in leprosy control.
4. Community Awareness
NLT has a range of Information, education and communication (IEC) activities that: alert people to the early symptoms of leprosy; raise awareness of leprosy-related issues; reduce the stigma of leprosy and build a supportive community for those affected by leprosy. Mobile teams visit villages to perform educational dramas or to present videos or puppet shows, for example. Local community groups are encouraged to undertake IEC activities themselves. People who have been affected by leprosy are included, thus becoming key educators in their own communities.
The Everest Marathon Fund has:
- Purchased five motorbikes to make travel easier and quicker for staff visiting outlying health posts.
- Paid £4,500 for a new podiatry unit opened at Lal Gadh Hospital; this was used to pay the salaries of three shoe-makers and raw materials for one year.
- A further £1,000 wasgiven to train a prosthesis technician.
- £4,000 has helped to fund a project to train people who are themselves affected by leprosy who will be able to identify and refer those with the early signs and symptoms of leprosy to prevent disability occurring.
- We have funded a further training programme for people affected by leprosy with professionally produced self-care videos and other training material.
- The money donated in 2002 was used for work in the villages. There is a team of 15 ‘default tracers’ who tour the villages by bicycle checking that patients are continuing and do finish their treatment. Leprosy, like TB, can easily be treated with multi drug antibiotic treatment but it is essential to complete the drug course. After treatment at Lal Gadh, many people return to their villages and do not realise the importance of completing the treatment.
- A leather machine was purchased for Himalayan Leather Handicrafts, a fund-raising trading branch of NLT in Kathmandu where people affected by leprosy manufacture high-quality leather products (bags, wallets, etc).
Money raised by the 2005 race will be used to purchase another trail motorbike, 60 bedside cabinets and an electric floor scrubber for Lalgadh hospital and a tempo for transporting patients from the bus stop to the hospital. A tempo is a 2-seater pram built on to a 3-wheeler scooter; now banned in Kathmandu because of air pollution, they are still the cheapest form of transport throughout many Asian countries.
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