'Only parents can understand the problems and needs of children with thalassaemia': parental activism for thalassaemia care in Northern India.

Abstract

Evolving knowledge of genetics and improved clinical care have re-shaped life choices for those suffering from chronic, incurable conditions and their families. Yet the realisation of care requires complex navigation to access vital therapies which is often difficult for individuals or their family carers. In the article, we explore the struggles and strategies of parents of children with thalassemia (a genetically inherited blood disorder) in a North Indian city, who have come together to ensure better long-term health of their children. A focus on the ways in which families come together and remain apart in their quest for guaranteed access to life-saving substances such as filtered blood, provides insight into the diversity of bio-social strategies at work. It is not only family relationships and kinship, we suggest, but bio-sociality itself which is reshaped with the advent of new rights-based languages, evolving therapies and state support which hold out new possibilities for young people with thalassemia to live as normal a life-course as possible.