Entanglements of Rare Diseases in the Baltic Sea Region

Inbunden, Engelska, 2023

AvMalgorzata Rajtar,Katarzyna E. Król,Katarzyna E. Krol

1 379 kr

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Although rare diseases have captured public attention in recent decades, the lived experiences of people affected by these conditions remain on the periphery of medical anthropological inquiry. Focusing on Poland, Finland, and Sweden, and foregrounding notions of “rare” or “chronic” disease as an embedded category, this book critically analyzes entanglements between people and families with rare diseases and care practices that involve local healthcare policies, practitioners, and treatment modalities. Drawing on locally grounded case studies, Entanglements of Rare Diseases in the Baltic Sea Region constitutes a unique and important contribution to both global medicine and social science scholarship.

Produktinformation

Utgivningsdatum2023-10-16
Mått157 x 238 x 19 mm
Vikt490 g
FormatInbunden
SpråkEngelska
SerieAnthropology of Well-Being: Individual, Community, Society
Antal sidor224
FörlagBloomsbury Publishing Plc
ISBN9781666942385

Tillhör följande kategorier

Chapter 1: Matriarchal Management, Expert Caregiving, and Intensive Mothering Among Mothers of Children with PhenylketonuriaChapter 2: Between Paternalism and Autonomy. Polish and Swedish Configurations of Caring for Children with Inherited Metabolic DiseaseChapter 3: Food as Medicine: Culinary Workshops for Patients with Rare Inborn Errors of Metabolism from Anthropological and Dietary PerspectivesChapter 4: Between Standard and Experimental: Knowledge Production and Tube Feeding Practices in Finland and PolandChapter 5: Entangled and Layered Temporalities: Rare-disease Patients’ Expectations about Clinical Gene EditingChapter 6: Health Emigration in Rare Disease: A Case StudyChapter 7: “Are You a Disabled Person?" Disability and Rare Metabolic Disorders in PolandConclusion: Rare Diseases and Cultures of Caring

This edited collection is a welcome contribution to the social science and anthropological understanding of rare disease, rare disease communities, and national policies and practices. Its focus on the Baltic Sea region is original, and through a series of case studies, each chapter chronicles a local context which has global resonance. The book attends to a wide range of social science topics, including biosociality, relationships, diagnostic work, resilience, expertise, health tourism, stigma, identity and norms of rareness, illness, and disability. It also acknowledges the often difficult experiences of patients and patient communities. In doing so, it both recognizes, and represents, the nuances and complexities of rare disease. Overall, this edited collection provides a data-rich and comprehensive overview which benefits from a broad authorship, including academics across multiple disciplines, students, practitioners, and patient advocates.