Hope: Valuing lives and persons with degenerative conditions — Duchenne muscular dystrophy

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Longmuir, Katriona; Park, Julie; Fitzgerald, Ruth; Legge, Michael and Shore, Cris. 2024. Hope: Valuing lives and persons with degenerative conditions — Duchenne muscular dystrophy. Sites: A Journal of Social Anthropology and Cultural Studies, 20(1), pp. 1-26. ISSN 0112-5990 [Article]

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Official URL: https://doi.org/10.11157/sites-id526

Abstract or Description

Duchenne muscular dystrophy (DMD) is a life-shortening genetic condition involving progressive muscular wasting for which there is no hope of recovery at present. The lives of people with DMD, cherished by their families, are systematically marginalised and undervalued by healthcare bureaucracies while enrolment in clinical trials of new treatments offers possibilities of longer-term biomedical solutions. How is hope preserved under such circumstances and what activities can promote a full and meaningful life for those with DMD Ethnographic research within the DMD community in Aotearoa New Zealand provided a basis for addressing these questions and for understanding different concepts of hope and social suffering, the value of life in DMD and disability studies, and how these are shaped by regimes of governmentality.

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Article

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https://doi.org/10.11157/sites-id526