Entanglements of Rare Diseases in the Baltic Sea Region (Anthropology of Well-Being: Individual, Community, Society)

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. Cover Contents List of Tables and Figures Acknowledgments Introduction Matriarchal Management, Expert Caregiving, and Intensive Mothering among Mothers of Children Between Paternalism and Autonomy Food as Medicine Between Standard and Experimental Entangled and Layered Temporalities Health Emigration in Rare Disease “Are You a Disabled Person?” Conclusion Index About the Editors About the Contributors