Description
Book SynopsisShares experiences of living with genetic disorders. This title includes stories that illustrate the complexities involved in making decisions about genetic diseases: whether to be tested, who to tell, whether to have children, and whether and how to treat children medically, if treatment is available.
Trade ReviewA compelling collection of essays that address the experiences of many who have genetically based illnesses... 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. VERDICT Recommended for those who are touched by genetic disorders or are interested in health in the modern world. Library Journal If there were an All-Star Team for memoirists struggling with genetic misfortune... The Story Within would surely be it. -- Patrick Tracey PsychCentral Thought provoking, moving and extremely interesting. -- Jane Brown Nursing Times For those who have traveled a similar path and who have faced genetic illnesses, these stories can be a source of comfort. These stories can also help inform and educate and generate much needed dialogue about health and body norms. The narratives in The Story Within are a reminder that every life has value. -- Dena Hurst Metapsychology The Story Within is a true success of a collection. With joy, rigor, and respect, it strvies to reconcile something like the original (one-of-a-kind) and the originator (universal), the literal (DNA) and the literary (collected essays). Original review below -- Adrien Guignard Gesnerus The Story Within est un collectif reussi. Il s'efforce avec bonheur, rigueur et respect de concilier quelque chose comme l'orignal (singulier) et l'originaire (universel), le litteral (de l'ADN) et le litteraire (des textes reunis). -- Adrien Guignard Gesnerus When medical students really feel that they understand genetics... let them read The Story Within and be brought down to earth with a bang. I know I was. BioNews
Table of ContentsAcknowledgments
Introduction
Part I: Finding Out: Genetics and Ideas of Self
Chapter 1. Undiagnosed
Chapter 2. Driving North
Chapter 3. Collateral Damage
Chapter 4. In Samarra
Chapter 5. The Unnumbered
Part II: Intervening: Living with Genetic Difference
Chapter 6. Of Helices, HIPAA, Hairballs . . . and Humans
Chapter 7. The Power of Two: Two Sisters, Two Genes, and Two New Chances at Life
Chapter 8. Permission to Look: Documenting the BRCA Mutation
Chapter 9. "Why Would You Be Wantin' to Know?" Not Talking about Schizophrenia in Ireland
Chapter 10. Help Wanted
Chapter 11. Community and Other Ordinary Miracles
Part III: Passing Down: Genetics and Family
Chapter 12. String Theory, or How One Family Listens Through Deafness
Chapter 13. What If
Chapter 14. The Long Arm
Chapter 15. Lettuce and Shoes
Chapter 16. Dear Dr. Frankenstein: Creation Up Close
Epilogue
Notes
List of Contributors
Index
