The Test: Living in the Shadow of Huntington's Disease

Jean Barema, Author
Jean Barema, Author . Franklin Square $14.95 (160p) ISBN 978-1-879957-57-2
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This moving memoir confronts head-on one of the hardest issues presented by new medical technologies: whether to be tested for a genetic disease when you are not symptomatic. Huntington's disease is a progressive central nervous system condition with no cure, that leads to depression, uncontrollable limb movements, dementia and death within five to 10 years. Because the author's mother died of Huntington's and his brother had been diagnosed with it, Baréma knew he had a 50% chance of getting it. Should he be tested for the defective gene? He agonizes for five years while watching his brother's deteriorating ability to walk, talk and eat, which he describes in haunting prose. In the midst of this turmoil, Baréma, a French journalist, discovers that his younger sister also has Huntington's. Beset by depression, suicidal thoughts and fears for his children, fear of passing on "this H-bomb," he's sustained by talks with a gifted neurologist and his wife's love. He finally breaks free of his paralyzing anguish and decides to be tested. To heighten his pain during the month-long waiting period for the results, his father dies suddenly. The agony surrounding the author's concern for his siblings mixed with an ever-present fear for himself is movingly evoked in this brief, intense book. (Oct. 11)

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