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pennyzizzle's review against another edition
4.0
I somehow read this book in two days despite my busy schedule and confusion over all the biology/genetic "stuff" (which is also endlessly fascinating). I may have a biased interest because of my family's history with Huntington's, but it so far the most insightful text I've read on the subject. And, needless to say, terrifying. But how it could it not be?
iguana_mama's review against another edition
4.0
Posted at Shelf Inflicted
“The ambiguous condition of 50% risk is extremely difficult to maintain in one’s mind, if not impossible. In practice, a 50-50 risk translates to a 100% certainty that one will or will not develop the disease.”
― Nancy Wexler, Genetic Russian Roulette
Before reading this book, I was aware that singer-songwriter Woody Guthrie died of Huntington’s disease in 1967. What I didn’t realize until after I read this book was how cruel this disease is. Symptoms usually develop between 30 and 50 years of age. In the early stages, patients may experience mild cognitive symptoms and psychiatric changes. Later on, they experience chorea, or abnormal involuntary movements, in different areas of the body. In later stages of the disease, individuals may have difficulty walking, speaking, and swallowing. Pneumonia and heart disease are the leading causes of death for people with Huntington’s disease.
Daniel Mundy’s (1976-2014) battle with Huntington’s disease:
https://www.youtube.com/watch?v=JzAPh2v-SCQ
This scientific memoir is utterly fascinating, despite the fact that some of the science went over my head. Still, I feel that Alice Wexler did an admirable job writing a compelling story about family, living with the risk of disease, and the innovation and efforts by her father, her sister, Nancy, and the scientific community that led to the discovery of a genetic marker for Huntington’s in 1983.
Alice’s mother, Leonore Sabin, was 53 in 1968 when she was diagnosed with the disease. Her father and three brothers had already died. Her husband, Milton, started the Hereditary Disease Foundation, and dedicated his efforts to inspiring researchers and caring for his sick ex-wife.
Nancy’s work with the foundation took her to the fishing villages near Lake Maracaibo in Venezuela, where about 1 in 10 people have Huntington’s disease.
Despite the grim subject matter, I found this very hopeful and optimistic. Even though there is still no cure for Huntington’s disease, there are drugs that can help alleviate certain symptoms and the option for those at risk to undergo genetic testing to find out whether they will develop HD in the future.
“The ambiguous condition of 50% risk is extremely difficult to maintain in one’s mind, if not impossible. In practice, a 50-50 risk translates to a 100% certainty that one will or will not develop the disease.”
― Nancy Wexler, Genetic Russian Roulette
Before reading this book, I was aware that singer-songwriter Woody Guthrie died of Huntington’s disease in 1967. What I didn’t realize until after I read this book was how cruel this disease is. Symptoms usually develop between 30 and 50 years of age. In the early stages, patients may experience mild cognitive symptoms and psychiatric changes. Later on, they experience chorea, or abnormal involuntary movements, in different areas of the body. In later stages of the disease, individuals may have difficulty walking, speaking, and swallowing. Pneumonia and heart disease are the leading causes of death for people with Huntington’s disease.
Daniel Mundy’s (1976-2014) battle with Huntington’s disease:
https://www.youtube.com/watch?v=JzAPh2v-SCQ
This scientific memoir is utterly fascinating, despite the fact that some of the science went over my head. Still, I feel that Alice Wexler did an admirable job writing a compelling story about family, living with the risk of disease, and the innovation and efforts by her father, her sister, Nancy, and the scientific community that led to the discovery of a genetic marker for Huntington’s in 1983.
Alice’s mother, Leonore Sabin, was 53 in 1968 when she was diagnosed with the disease. Her father and three brothers had already died. Her husband, Milton, started the Hereditary Disease Foundation, and dedicated his efforts to inspiring researchers and caring for his sick ex-wife.
Nancy’s work with the foundation took her to the fishing villages near Lake Maracaibo in Venezuela, where about 1 in 10 people have Huntington’s disease.
Despite the grim subject matter, I found this very hopeful and optimistic. Even though there is still no cure for Huntington’s disease, there are drugs that can help alleviate certain symptoms and the option for those at risk to undergo genetic testing to find out whether they will develop HD in the future.
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