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Entanglements of Rare Diseases in the Baltic Sea Region

Małgorzata Rajtar and Katarzyna E. Król - Contributions by Anna Chowaniec; Ewa Ehmke vel Emczyńska-Seliga; Jan Frydrych; Roosa Harmo; Katarzyna E. Król; Małgorzata Rajtar; Filip Rogalski; Małgorzata Skweres-Kuchta; Karoliina Snell; Aaro Tupasela and Kirmo Wartiovaara

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.

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  • TOC
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Lexington Books
Pages: 224 • Trim: 6¼ x 9⅜
978-1-66694-238-5 • Hardback • October 2023 • $100.00 • (£77.00)
978-1-66694-239-2 • eBook • October 2023 • $45.00 • (£35.00)
Series: Anthropology of Well-Being: Individual, Community, Society
Subjects: Social Science / Anthropology / Cultural, Social Science / Sociology / General, Social Science / Ethnic Studies / European Studies

Małgorzata 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.

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

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.


— Rebecca Dimond, Cardiff University


Entanglements of Rare Diseases in the Baltic Sea Region provides in-depth analysis of the experiences families face in caring for and understanding the needs of those experiencing “orphan” illnesses. Utilizing ethnographic insights and survey data, contributors push theoretical understandings of “chronic homework” and what it means to be considered “rare.” An important collection documenting transnational immigration in search of supportive care as well as unique family-based interventions in an understudied region.


— Nancy Burke, University of California, Merced


Entanglements of Rare Diseases in the Baltic Sea Region

Cover Image
Hardback
eBook
Summary
Summary
  • 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.

Details
Details
  • Lexington Books
    Pages: 224 • Trim: 6¼ x 9⅜
    978-1-66694-238-5 • Hardback • October 2023 • $100.00 • (£77.00)
    978-1-66694-239-2 • eBook • October 2023 • $45.00 • (£35.00)
    Series: Anthropology of Well-Being: Individual, Community, Society
    Subjects: Social Science / Anthropology / Cultural, Social Science / Sociology / General, Social Science / Ethnic Studies / European Studies
Author
Author
  • Małgorzata 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.

Table of Contents
Table 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

Reviews
Reviews
  • 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.


    — Rebecca Dimond, Cardiff University


    Entanglements of Rare Diseases in the Baltic Sea Region provides in-depth analysis of the experiences families face in caring for and understanding the needs of those experiencing “orphan” illnesses. Utilizing ethnographic insights and survey data, contributors push theoretical understandings of “chronic homework” and what it means to be considered “rare.” An important collection documenting transnational immigration in search of supportive care as well as unique family-based interventions in an understudied region.


    — Nancy Burke, University of California, Merced


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