Wexler tells two stories, the one of her family's emotional odyssey after her mother was diagnosed with Huntington's disease, and the relentless efforts to find the gene and a cure, and the news that she had a 50/50 chance of getting it also. This book comes from her unique position of being both reporter of how scientists sought a cure and someone who could be saved by it.
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Alice Wexler has taught at Occidental College and UCLA.
two stories, the one of her family's emotional odyssey after her mother was diagnosed with Huntington's disease, and the relentless efforts to find the gene and a cure, and the news that she had a 50/50 chance of getting it also. This book comes from her unique position of being both reporter of how scientists sought a cure and someone who could be saved by it.
Huntington's disease (HD), the devastating motor degeneration that often leads to insanity and suicide, is the subject of this searing memoir. In 1968, Wexler's mother was so diagnosed, prompting a family mission that led to their formation of the Hereditary Disease Foundation. Parallel stories unfold when Wexler and her sister begin to anticipate the possibility of their own genetic doom as secrets of their mother's family history are revealed and scientific research eventually isolates the genetic marker for HD, formerly called Huntington's chorea. This victory remains a mixed blessing since, as Wexler states, "identifying the gene does not immediately... translate into effective therapy; what has changed is the psychological landscape." Until now, folksinger Woody Guthrie's has been the most prominent name associated with HD; this report speaks to others afflicted by Huntington's. 25,000 first printing.
Copyright 1995 Reed Business Information, Inc.
Huntington's disease (HD) could be called the cruelest disease, for its victims do not usually show symptoms of the hereditary malady until middle age and grow up observing in detail its debilitating effects on a mother, father, or other relative. Such was the experience of the three Wexlers--Alice, Nancy, her sister, and Milton, their father--as with increasing horror and sadness, they watched HD destroy their mother and wife, Leonore. (For the rest of his life, Milton blamed himself for his "terrible mistake" when, a year after the diagnosis, he aborted Leonore's attempted suicide.) Wexler's personal account of HD's impact on her family makes its points strikingly but without false emotion, and her pessimism counters the optimism of Nancy and Milton, who, as the book's second part relates, established the Hereditary Disease Foundation to pursue HD research and education. William Beatty
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