Rating: (6 reviews) Author: Visit Amazon's Alice Wexler Page ISBN : 9780300158618 New from $15.94 Format: PDF
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“Wexler provides an accessible account of a disease in history. A richness of context gives her study its strength and character.”—Charles E. Rosenberg, Harvard University
(Charles E. Rosenberg)“This is a remarkable story of ‘St. Vitus' Dance’ (Huntington's Chorea) from many perspectives: personal, historical and social. Its meticulous history, drawn from archives and personal experience details how this late-onset hereditary disease was viewed not only medically but personally and socially by family members, neighbors and friends of afflicted individuals. This is a must read for anyone interested in the social history and policy surrounding hereditary disease.”—Garland Allen, Washington University in St. Louis
(Garland Allen)“This is at once a riveting history of a deadly genetic disease and a sensitive rendering of how fear of the affliction shaped the lives of people at risk and affected their families and community. Wexler discerningly exposes the hereditarian values that made the victims outcasts yet unflinchingly makes clear that in its grim physical reality Huntington’s disease is independent of any social construction. In all, a brave and pioneering work.”—Daniel Kevles, author of In the Name of Eugenics: Genetics and the Uses of Human Heredity
“This book is an engaging chronicle of how the lived experience of illness in a family and community transforms over centuries into an intensely monitored and medicalized hereditary disease. Wexler does what historians do best: she folds what we take now to be a straightforward phenomenon, Huntington’s disease, back into the story of its making. By doing so, she tells us something profound about how we imagine ourselves and how we are connected to one another.”—Rosemarie Garland-Thomson, author of Extraordinary Bodies: Figuring Physical Disability in American Literature and Culture
“A brave and pioneering work.”—Daniel Kevles, author of In the Name of Eugenics: Genetics and the Uses of Human Heredity
(Daniel Kevles)"[A] detailed and evocative portrait. . . . Using a range of sources—including diaries, letters, business ledgers, whaling logs and local newspapers—Ms. Wexler re-creates a picture of a long-ago place where doctors lived next-door to their patients and where generation after generation of a community's most prominent members struggled with a crippling disease."—Amy Dockser Marcus, Wall Street Journal
(Amy Dockser Marcus Wall Street Journal 2008-12-18)"Highly recommended."—Choice
(Choice 2009-03-01)“Alice Wexler has once again accomplished the near impossible by writing a fascinating academic page-turner. Filled with truth and brilliance throughout, The Woman Who Walked into the Sea is an amazing book that leaves the reader not only better informed, but materially enriched, moved by the experience, and not wanting it to end.”—Carole Browner, University of California, Los Angeles
About the Author
Alice Wexler is a research scholar at the UCLA Center for the Study of Women and the author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research. She lives in Santa Monica.
- Paperback: 253 pages
- Publisher: Yale University Press (January 26, 2010)
- Language: English
- ISBN-10: 0300158610
- ISBN-13: 978-0300158618
- Product Dimensions: 0.8 x 5.9 x 9 inches
- Shipping Weight: 15.5 ounces (View shipping rates and policies)
The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease PDF
Read through the media, and you'll find all sorts of opinions about what diseases deserve more research dollars. Sadly, I can't recall any major media pieces in recent years stressing the need for more focus on Huntington's disease. While it may be a rare condition, there is no illness I can think of that creates more dread in those at risk for developing it and creates more havoc on those who do develop it. Significantly more resources and compassion are needed to fight this illness.
The quick facts:
1) A child born to a parent with Huntington's disease has a 50% chance of developing the illness later in life (if the child inherits a mutant form of the Huntington's gene from his/her parent, he/she has approximately 100% odds of developing the disease later in life).
2) Symptoms of Huntington's disease often develop around age 30 or later--after one has already had children--and late enough in life so that the children can see what happens to their affected parent.
3) Huntington's disease causes an progressive, unrelenting movement disorder (chorea) with progressive mental decline and death.
4) In the past (and no doubt today, too), patients with Huntington's disease and their blood relatives have been stigmitized and ostracized. Within the past century, attempts (some successful) have been made to sterilize patients and prevent them from marrying (in Germany and the US).
5) The disease may be so stigmitizing and physically destructive that children of Huntington's patients who start to develop symptoms are at risk for suicide. In fact, this book is based upon the story of a woman who develops symptoms and literally walks into the sea to end her life.
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