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Awareness for World Leprosy Day 2019

Today is World Leprosy Day, to promote awareness about this disease that is still prevalent in developing countries like Nepal. We work with the Nepal Leprosy Trust who have worked tirelessly to educate, diagnose and treat patients in Kathmandu and Lalguardh in South Nepal. AURA QUE has worked directly with producers at NLT since 2006, many of whom have had leprosy or had someone in their family who has been affected. Though a simple disease to treat with antibiotics, it is the deformities and physical disabilities that stay with the patient once they are well, which affect their capabilities to look after themselves and their families. Many have been ostracized from their community due to their disease and the stigma it brings.

What is Leprosy?
See below information from NLT:
Leprosy is an infectious disease of the skin and nerves which, if not diagnosed and treated quickly, can result in debilitating disabilities. It usually affects peripheral nerves, and can now be medically cured simply and cheaply through multi-drug therapy. However, the stigma associated with leprosy remains a major problem and those affected by leprosy are marginalised and suffer continual psychological, as well as physical, distress. It often seems to be a disease of poverty, and those who contract leprosy are often tipped from poverty into extreme poverty very quickly. In 2016, over 214,000 people worldwide were diagnosed and millions more go undiagnosed.
Leprosy can cause anaesthesia in the hands, feet and eyes. Without pain, which acts as a warning to protect oneself, 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 obvious, the demands of life for those trapped in poverty may not allow them the choice to avoid infection or further injury. Infection can lead to deformity and ulceration, and these lead to ostracism – resulting in further social and psychological damage.
The effects of leprosy are exacerbated by the negative stigma surrounding the disease. In the predominantly Hindu culture of Nepal, leprosy is perceived in many village communities as a punishment for misdeeds in a former life. Villagers do not usually 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 many fears and misconceptions mean that those with early symptoms of leprosy, 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.
Quality of life tends to be evaluated by those in the West in terms of freedom from disease, hunger, suffering, ignorance, etc. However, this view is inappropriate in Nepal, where social exclusion is probably the greatest challenge. To be dislocated from one’s family or community in a Hindu society is a denial of any meaningful role in life. The underdeveloped population anticipates hunger, disease and death, but isolation is not expected and is regarded with dread because there are no social strategies to cope with it. In Hindu culture, in which there is no strong concept of ‘self’, an individual’s role is dependent in every way on the strong bonds that exist within the extended family, and the community – from which the family draws its identity. Although the values and structure of families vary, the concept of family is fundamental.

Laura Queening

Designer

AURA QUE


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