ILEP’S MEMBER ASSOCIATIONS ARE WORKING
TOGETHER FOR A WORLD FREE FROM LEPROSY
Functional impact of Leprosy: The impairments associated with leprosy can make it difficult for people to conduct daily activities. For example, people who lose sensation or strength in their hands will have more difficulty with simple tasks, such as threading a needle or holding a spoon; and people who are unable to lift their foot (“foot drop”) will have difficulty walking. An estimated 20%–25% of people affected by leprosy experience disability. Early detection of leprosy and proper treatment combined with regular check-ups are key to preventing disabilities.
Social impact of Leprosy: Often, it is not the physical impairments or even the functional limitations that cause the greatest problems for people affected by leprosy. Instead, it is stigma and social exclusion that have the greatest impact. People who are affected with leprosy and have visible deformities are mostly neglected and often unable to find work or marry and therefore remain dependent on others for financial support and care. Self-stigma is also common – People start blaming themselves for their disease, which results in feelings of worthlessness and loss of self-esteem, hope and purpose. . Women, owing to their increased vulnerability, are disproportionately affected.
These issues have highlighted elsewhere that women with disabilities are often more vulnerable and disadvantaged in society. This is also true for women with leprosy. A general lack of awareness and knowledge within communities about leprosy, e.g. whether it is inherited, infectious or curable, has an impact on relationships, marriage, and family. Many women and Men have been abandoned by their spouses, particularly if they were only recently married, and for many unmarried women, persons affected by leprosy can severely restrict their marriage prospects.
Economic impact of Leprosy: Leprosy can have a considerable economic impact on individuals and their families. People may be unable to join workforce, owing to impairments associated with leprosy. People may also lose jobs because of the stigma related to leprosy. For example, people are often reluctant to buy goods, from a person affected by leprosy, for fear of contamination. There are also treatment-related costs. While drug treatment is free, frequent visits to health care facilities have cost implications, especially travel costs and loss of wages. There may also be additional treatment costs, related to hospital admissions or purchase of protective footwear, orthoses, or prostheses, Therefore many people try to refrain from accessing these services. As a result, they may develop secondary conditions and the impact of their disability may increase.
Educational Impact of Leprosy: Children self-affected by leprosy or belong to a household that has a person affected by leprosy, find it hard to access education due to stigma and discrimination in school or community. Children are forced to drop out of schools, isolated from their friends, and hidden away by their families, or asked to work and earn. Social rehabilitation programmes can ensure that children (and adults) are able to access education opportunities in their communities.
Livelihood Impact of Leprosy: People with leprosy are often poor; Moreover, issues, such as stigma, discrimination and disability associated with leprosy often restrict opportunities for work and push them to more acute poverty. Skills training and decent work can provide a strong entry point for integration into society and are a mechanism for breaking the cycle of isolation, dependency, and poverty, commonly associated with disability. When people with disabilities can make financial contributions to their families, they often report increased participation in family activities, especially in decision-making. There are many social rehabilitation programmes which can support persons affected by leprosy to have a decent living.