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Entanglements of Rare Diseases in the Baltic Sea Region

Authors:
Publisher:
 2023

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.

Keywords



Bibliographic data

Edition
1/2023
Copyright year
2023
ISBN-Print
978-1-6669-4238-5
ISBN-Online
978-1-6669-4239-2
Publisher
Lexington, Lanham
Language
English
Pages
214
Product type
Book Titles

Table of contents

ChapterPages
    1. Contents No access
    2. List of Tables and Figures No access
    3. Acknowledgments No access
  1. Introduction No access Pages 1 - 20
  2. Matriarchal Management, Expert Caregiving, and Intensive Mothering among Mothers of Children No access Pages 21 - 46
  3. Between Paternalism and Autonomy No access Pages 47 - 66
  4. Food as Medicine No access Pages 67 - 88
  5. Between Standard and Experimental No access Pages 89 - 112
  6. Entangled and Layered Temporalities No access Pages 113 - 130
  7. Health Emigration in Rare Disease No access Pages 131 - 166
  8. “Are You a Disabled Person?” No access Pages 167 - 194
  9. Conclusion No access Pages 195 - 204
  10. Index No access Pages 205 - 208
  11. About the Editors No access Pages 209 - 210
  12. About the Contributors No access Pages 211 - 214

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