Malgorzata Rajtar, Katarzyna E. Król

Entanglements of Rare Diseases in the Baltic Sea Region (eBook, PDF)

• Format: PDF

Produktbeschreibung

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.

Produktdetails

• Verlag: Bloomsbury eBooks US
• Seitenzahl: 1
• Erscheinungstermin: 16. Oktober 2023
• Englisch
• ISBN-13: 9781978781290
• Artikelnr.: 74847305

Autorenporträt

Malgorzata 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 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