Entanglements of Rare Diseases in the Baltic Sea Region

This book explores the lived experiences of people with rare diseases in the Baltic Sea Region, highlighting the entanglements between them and care practices. It makes a significant contribution to global medicine and social science scholarship.

Format: Unspecified
Length: 236 pages
Publication date: 15 November 2023
Publisher: Lexington Books

Despite the growing public awareness of rare diseases in recent decades, the lived experiences of individuals impacted by these conditions have often been overlooked in medical anthropological research. This book, focusing on Poland, Finland, and Sweden, explores the intricate connections between individuals and families affected by rare or chronic diseases and the care practices that are shaped by local healthcare policies, practitioners, and treatment modalities. By drawing on locally grounded case studies, Entanglements of Rare Diseases in the Baltic Sea Region makes a distinctive and significant contribution to global medicine and social science scholarship.

Rare diseases have garnered significant public attention in recent years, yet the experiences of those affected by these conditions remain largely marginalized within medical anthropological inquiry. This book, with a particular focus on Poland, Finland, and Sweden, delves into the complex web of relationships between individuals and families impacted by rare or chronic diseases and the healthcare policies, practitioners, and treatment modalities that shape their care. Through the lens of locally grounded case studies, Entanglements of Rare Diseases in the Baltic Sea Region emerges as a groundbreaking and indispensable contribution to both global medicine and social science scholarship.

In the chapters that follow, the book examines the multifaceted entanglements between people and families living with rare diseases and the healthcare systems they navigate. It explores the ways in which local healthcare policies, practices, and treatment modalities intersect with the experiences of individuals and families, shaping their access to care, treatment outcomes, and overall well-being. By examining these intersections, the book sheds light on the complex dynamics and power relations that shape healthcare systems and the experiences of those who are marginalized within them.

One of the key themes that emerge from the case studies is the importance of community-based care and support for individuals and families affected by rare diseases. The book highlights the role of grassroots organizations, patient advocacy groups, and social movements in advocating for better care and raising awareness about rare diseases. It demonstrates how these communities can provide a sense of belonging, validation, and support for individuals and families who often feel isolated and marginalized by their conditions.

Another important theme is the impact of genetic testing and personalized medicine on the care and treatment of rare diseases. The book explores how advances in genetic technology have opened up new possibilities for diagnosis, treatment, and prevention of rare diseases. However, it also raises concerns about the ethical implications of genetic testing, the potential for discrimination, and the need for equitable access to genetic information and treatment.

The book also examines the social and cultural dimensions of rare diseases, highlighting the ways in which they intersect with broader societal norms, values, and beliefs. It explores how rare diseases can shape individuals' identities, relationships, and social interactions, and how they can challenge dominant narratives about health, illness, and disability. The book also considers the ways in which cultural differences and disparities in healthcare access and treatment can exacerbate the experiences of individuals and families living with rare diseases.

In conclusion, Entanglements of Rare Diseases in the Baltic Sea Region is a groundbreaking and essential contribution to medical anthropology and social science scholarship. By focusing on the lived experiences of individuals and families affected by rare diseases, the book sheds light on the complex web of relationships and power dynamics that shape healthcare systems and the experiences of those who are marginalized within them. The book's rich case studies, combined with its critical analysis of local healthcare policies, practices, and treatment modalities, provide a valuable resource for researchers, policymakers, and practitioners working to improve the care and well-being of individuals and families living with rare diseases.

Dimension: 229 x 152 (mm)
ISBN-13: 9781666942385