Fr. 130.00

Entanglements of Rare Diseases in the Baltic Sea Region

English · Hardback

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Description

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Drawing on ethnographic studies of the lived experiences of people with rare diseases, this volume critically examines rare, chronic diseases in the context of care, kinship, and technologies, providing in-depth analyses of local worlds that usually remain at the peripheries of medical anthropological inquiry.

List of contents










Chapter 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


About the author










By Malgorzata Rajtar and Katarzyna E. Król - Contributions by Anna Chowaniec; Ewa Ehmke vel Emczynska-Seliga; Jan Frydrych; Roosa Harmo; Katarzyna E. Król; Malgorzata Rajtar; Filip Rogalski; Malgorzata Skweres-Kuchta; Karoliina Snell; Aaro Tupasela and Ki

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