The disease isn’t highly contagious, but due to lack of information and false beliefs, people affected by leprosy can experience severe discrimination and prejudice. The consequences can be devastating. People are often shunned by their community or even their own family. Being diagnosed with leprosy could lead to a lifetime of abuse, isolation and shame.
Leprosy is caused by a bacillus, called Mycobacterium Leprae. It mainly affects the skin, the peripheral nerves, mucus membranes in the mouth and nose, and also the eyes. The first sign is usually a patch of discoloured skin. Leprosy is curable. But if it is left untreated it causes permanent damage to hands, feet and eyes. This can lead to paralysis, blindness, ulcers and even amputations.
Despite government efforts, the number of leprosy patients in Nepal has been constantly rising – in recent years from to nearly 6,000. This includes over 3,000 newly diagnosed cases in 2017 alone. In addition to people who are registered as patients, there are thousands of former patients who are living with the effects of leprosy – ranging from physical disability to the mental, social and economic effects of the disease. The journey to see Nepal free from leprosy is still far from over…
£16: Check up and skin smear tests for 20 people visiting an INF health camp.
£25: Training for a community health volunteer, enabling them to identify potential new cases and to support people on their journey of healing and recovery.
£79: Visit to a rural health centre to train staff in outpatient departments on diagnosis, treatment and support for leprosy patients.
£174: Training for a laboratory technician, enabling them to accurately diagnose new cases so that more people can get treatment at an early stage of the disease.
All of INF’s three Shining Hospitals offer health care services for people with leprosy, including diagnosis, treatment and care for those who have suffered disabilities as a consequence of their condition.
Patients who couldn’t be healed in time to prevent leprosy attacking their nerves and lost sensation in body parts are at risk of injuries, which, if unnoticed, can lead to infections and potentially amputations. Teaching people how to prevent injuries and how to take care of their body plays an important role in reducing the effects of leprosy on peoples’ lives.
On a practical level, the hospitals offer services such as reconstructive surgery, fitting prosthetic limbs, and creating individually tailored assistive devices. These might include walking aids, specially designed protective boots or tools to hold objects for those who have lost their fingers. But showing patients that others deeply care about them, showing them love, respect, that they matter and are not alone in their suffering, can be a profound and life-changing experience for people who have been treated as cursed and outcasts.
Helping communities to lose the fear of the disease is essential in order to combat discrimination. INF has put plans into place to give people the knowledge and confidence to include leprosy sufferers in their daily lives and to seek help if they suspect an infection. These plans include radio broadcasts and awareness-raising campaigns in schools and churches.
Self-help groups for leprosy sufferers are playing an important part as they empower people to have a voice in their community, and support members in finding new ways to earn income, particularly if leprosy has left them with a disability.
It is not only fear of discrimination that prevents people from seeking medical help – it is often a lack of confidence in the service that is available.
Since leprosy was declared ‘eradicated’ a few years ago, training in diagnosis and treatment were considered less important, which left many patients undiagnosed. INF’s health camps, in partnership with rural health posts, offer great opportunities to detect new cases and to give advice for treatment of related health problems and complications.
The Shining Hospital in Surkhet has a highly skilled team which is working with Nepal’s Department of Health Services to ensure that health posts and primary health centres have adequate equipment for microscopy and laboratory services, and that staff are sufficiently trained. Enabling technicians to deliver good laboratory services for diagnosis, and educating health workers about options for treatment, are essential to gain the trust of people in their community so that they find the courage to seek help. INF has seen a dramatic increase in patient numbers at health posts once the community had gained confidence in the service.
Gunj, a laboratory technician, attended one of INF’s skin smear test training courses in Surkhet last year.
He told INF staff that he used to struggle to do the tests accurately, had often made mistakes, or found the results confusing. After the training he felt more confident in doing the tests correctly. Gunj told staff that it had helped him to see the importance of the tests and how they can save people from lifelong deformities and disabilities. He left committed to giving skin smear tests an equal priority in his work place, and motivated to share his newly gained knowledge with his colleagues.