- Dingdingdong – ICS Maladie de Huntington — From the Huntingtonian Wonderlands with Love
- [PDF] The Woman Who Walked into the Sea: Huntington s and the Making of a Genetic Disease Full
- The Woman Who Walked Into the Sea: Huntington's and the Making of a Genetic Disease
Perhaps I found it hard to read initially where my personal involvement with Huntington's was making it overwhelming at times. I needed to take a breather as it was so emotionally draining, feeling the sorrow for those who were treated in previous generations. No one knew any better but I felt for people I had never met, knowing how hard it is to cope with HD even in this day and age.
I went away from the book for a little while then came back to it with a revived interest and was able to finish it. I'm very glad I gave it another go and was able to be enlightened as the story does need to be read. Mar 06, Amy rated it liked it. At first, I was intimidated by the prospect of reading a medical book, but Wexler does a fine job of detailing a sociological history of Huntington's Disease without being bogged down in medical jargon. This book gave me some excellent insight to the disease that has haunted my family for generations.
Dingdingdong – ICS Maladie de Huntington — From the Huntingtonian Wonderlands with Love
Nov 29, Pancha added it Shelves: history , medicine , non-fiction. This book focuses on Huntington's Disease in the Eastern US, with forays into historical accounts of the disease from antiquity etc. It also focuses on the social effects the disease had on families broadly from the s to the current day, with special attention paid to the effect of the eugenics movement. Feb 28, Dan rated it liked it. Although I got bogged down early in the perhaps overly detailed genealogy of some of the early American families with Huntington's disease, I'm glad I stuck with it.
I can recommend it to those interested in the histories of neurology, psychiatry, and human genetics including the eugenics movement in 19th and 20th century America. Mar 15, Barb Gant rated it it was amazing. Wonderful book about the rise and spread of Huntington's disease.
[PDF] The Woman Who Walked into the Sea: Huntington s and the Making of a Genetic Disease Full
How people came to recognize it as a genetic disorder after passing it off for generations, watching family members suffer with what they called St. Vitus Dance. Aug 17, Emily Brown rated it it was ok Shelves: history , science. Jun 14, Jonah rated it liked it Shelves: adult-nonfiction , historical-nonfiction. This book wasn't quite what I wanted it to be- I think the book I wanted may be the author's first book on Huntington's, which she hints was more autobiographical.
It was still reasonably interesting, and it made me re-examine my belief that people with Huntington's shouldn't have kids. It was interesting to me that the author cites feminism as an inspiration in the writing of the book; it was sometimes jarring that masculinity is cited as a character aspiration in a fairly neutral way and "male" This book wasn't quite what I wanted it to be- I think the book I wanted may be the author's first book on Huntington's, which she hints was more autobiographical.
It was interesting to me that the author cites feminism as an inspiration in the writing of the book; it was sometimes jarring that masculinity is cited as a character aspiration in a fairly neutral way and "male" is inserted in places. Jan 03, Serena rated it really liked it Shelves: non-fiction-general , non-fiction-history , science. Essentially this book is a social and historical look at Huntington's disease, primarily in the US. It talks about the confluence about ideas of hereditry, neurology, and the practice of community medicine. A later chapter on eugenics reminds how an understanding of genetics can be used for ugly purposes.
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Apr 02, Kym rated it it was amazing Shelves: owned , ancestry. What a surprise to find out that Huntington's Disease brutally ravaged my ancestors, but my little branch of the massive tree remained free from it. My ancestors are well documented in this book, and the woman who walked into the sea was an aunt. Apr 12, Beth marked it as unfinished Shelves: ot.
May 02, Renee rated it it was amazing. This is really fascinating. Karen rated it it was amazing Nov 07, Courtney Bhalerao rated it really liked it Jan 27, George rated it really liked it Jul 05, 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. By doing so, she tells us something profound about how we imagine ourselves and how we are connected to one another. 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.
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Huntington's and the Making of a Genetic Disease. Description Reviews Awards Table of Contents. Provides important information for scientists, activists, and families involved in the search for treatments and better care for people with neurological diseases. Instead of following the standard line about heroic researchers, Alice spends much of the book focusing on the challenges faced by the families. The ambiguous Dr. Huntington Thus the American physician Dr.
George Huntington appears in the book as a very ambiguous figure. On the one hand, he was the first scientific observer to note that HD involved what would eventually be called "dominant inheritance" - in other words, that a child of an affected parent had a chance of inheriting the genetic defect and that the disease disappeared in the branch of a family where a particular parent did not have it. As a result, after the publication of Dr. Huntington's findings in , St. Vitus's dance quickly became known as Huntington's chorea - "chorea," of course, meaning the shaking produced by the disease.
On the other hand, Dr. Huntington used the concept of "insanity" to describe the depression and difficulties in judgment resulting from HD. That emphasis, Alice asserts, "introduced a term with powerful negative associations" and "may have heightened social fears surrounding the disease. Despite the importance of his discovery, Dr.
Huntington showed no interest in carrying out further research. The Woman Who Walked into the Sea teaches us that, in the late s and early s, many other scientists were involved in discussions about HD, both positive and negative.
- Alice Wexler's "The Woman Who Walked into the Sea" reviewed by Gene Veritas.
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Understanding the disease was a collective, international effort. As the field of medicine modernized in the late s and created the new specialty of neurology, Huntington's was transformed from a "medical curiosity" into an "interesting" disease, Alice observes. Because of HD's genetic cause and consistent symptoms, many neurologists came to see it as the "neurological disorder par excellence. It helped to disprove the widely held belief that acquired - not genetic - influences could be passed on to the next generation.
Understanding that a disease could have a specific genetic cause invalidated the belief that a person's "weakness" or generalized tendency to illness could degenerate into any number of diseases.
The Woman Who Walked Into the Sea: Huntington's and the Making of a Genetic Disease
Eugenics and sterilization However, scientific progress, combined with an exaggerated emphasis on survival of the fittest, fostered extreme measures against people with disabilities. Long before Nazi Germany, the United States embraced eugenics, the idea that society should improve its genetic stock by preventing the unfit from having children. In , Indiana passed the first legislation legalizing sterilization of inmates in public institutions.
Over the next three decades, our country produced the harshest eugenics laws in the world outside those implemented by the Nazis. Families with HD bore the brunt of eugenics. Alice describes the work of Dr. Elizabeth Muncey, a federal Eugenics Record Office researcher who compiled information on more than 4, people, past and present, who were linked to Huntington's. In this environment, her questioning, not only of the affected families but of their neighbors, ministers, and physicians, as well as town officials, inevitably put the families on display in a way that they had never experienced before.
Charles Davenport, a scientist who worked with Muncey and analyzed her data, concluded that "it would be a work of far-seeing philanthropy to sterilize all those in which chronic chorea has already developed.