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