Malgorzata Rajtar, Katarzyna E. Król

Entanglements of Rare Diseases in the Baltic Sea Region

• Gebundenes Buch

Produktbeschreibung

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.

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Produktdetails

• Anthropology of Well-Being: Individual, Community, Society
• Verlag: Lexington Books
• Seitenzahl: 224
• Erscheinungstermin: 16. Oktober 2023
• Englisch
• Abmessung: 235mm x 157mm x 18mm
• Gewicht: 521g
• ISBN-13: 9781666942385
• ISBN-10: 1666942383
• Artikelnr.: 68535679

Autorenporträt

Mägorzata Rajtar is associate professor and head of the Rare Disease Social Research Center at the Institute of Philosophy and Sociology of the Polish Academy of Sciences. Katarzyna E. Król is a PhD student at the Graduate School for Social Research at the Institute of Philosophy and Sociology of the Polish Academy of Sciences.

Inhaltsangabe

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