Community Involvement in the Care of Persons Affected by Podoconiosis-A Lesson for Other Skin NTDs.

TROPICAL MEDICINE AND INFECTIOUS DISEASE(2018)

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Abstract
Podoconiosis is a neglected tropical disease (NTD) characterized by lower-leg swelling (lymphedema), which is caused by long-term exposure to irritant red-clay soils found within tropical volcanic high-altitude environments with heavy rainfall. The condition places a substantial burden on affected people, their families and communities, including disability, economic consequences, social exclusion, and stigma; mental disorders and distress are also common. This paper focuses on community-based care of podoconiosis, and, in particular, the role that community involvement can have in the reduction of stigma against people affected by podoconiosis. We first draw on research conducted in Ethiopia for this, which has included community-based provision of care and treatment, education, and awareness-raising, and socioeconomic rehabilitation to reduce stigma. Since people affected by podoconiosis and other skin NTDs often suffer the double burden of mental-health illness, which is similarly stigmatized, we then point to examples from the mental-health field in low-resource community settings to suggest avenues for stigma reduction and increased patient engagement that may be relevant across a range of skin NTDs, though further research is needed on this.
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Key words
podoconiosis, lymphedema, neglected tropical diseases, NTDs, mental health, community engagement, patient involvement, stigma
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