Life with a genetic disorder

storywithinA thought-provoking collection of 16 essays—edited by Boston College Associate Professor of English Amy Boesky—offers first-hand, powerful accounts of life with genetic disorders. In The Story Within: Personal Essays on Genetics and Identity (Johns Hopkins University Press, 2013), contributors shed light on complex decision-making and explore how genetic information shapes the way we see ourselves and the world. The writers reflect a range of responses but share the desire to challenge a restricted sense of “health,” or whose life has value, and hope to expand conversations. They or their family members are affected by such diseases as Huntington’s, Alzheimer’s, cancer, genetic deafness or blindness, schizophrenia, cystic fibrosis, Tay-Sachs, hypertrophic cardiomyopathy, fragile X, or Fanconi anemia. Their moving essays underscore that genetic health is complicated, dynamic and deeply personal. Boesky, author of What We Have, is one of the contributing authors, as is BC Associate Dean of Arts & Sciences Clare Dunsford, author of Spelling Love with an X: A Mother, A Son, and the Gene that Binds Them. The Story Within is called “a compelling collection” by the Library Journal, which goes on to say: “These pieces can comfort those in similar situations; inform friends, relatives, and caregivers; enlighten health providers; and help us all better understand how others experience the world in which we live.” Video interview from BC Libraries.

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