This story of one exceptionally accomplished family's discovery of their past and future relationships with Huntington's Disease (HD) is also the story of how the Wexler family changed the cultural narrative of HD for other families at risk for this genetically-transmitted and currently incurable disease. The HD diagnosis of Leonore Wexler (the author's mother) inspires Milton Wexler, a psychologist, to create a major foundation for HD research, which develops critical mass and influence as Leonore Wexler's condition deteriorates, and after her death. The book interweaves the story of the Wexlers' emotional and other negotiations with HD and the story of their efforts to create an HD community comprised of those with active symptoms of HD, family members, advocates, and researchers.


The family story and the story of the development of HD research are inextricably intertwined and equally riveting. Wexler writes as a "vulnerable observer" (anthropologist Ruth Behar's term), with the dual consciousness of a family member who is also a scholar and historian. This well-written and compelling memoir of illness and the family addresses a bounty of issues specific to HD and other conditions about which some knowledge about future risk can be acquired, but courses of action are limited: there is no cure.

The book also explores the power associated with withholding/disclosure of information; family secrets; denial; and guilt feelings (of parents who transmit risk to their offspring; of one sibling who discovers s/he does not carry the gene, while another does). It dramatizes, honestly and compassionately, a wide range of issues relevant to many experiences of illness in the family.


Univ. of California Press

Place Published

Berkeley, Los Angeles, London



Page Count