The Test

The Test

Living in the Shadow of Huntington’s Disease

Jean Baréma

Category: General Interest

Is it better to know or not to know? This question haunts Jean Baréma, a French journalist who witnessed his mother's agonizing death from Huntington's disease. Now his brother and sister are succumbing to the disease, and he is about to find out if he, too, will be its victim.

 


Huntington's disease, a slow degeneration of the central nervous system, ravages the mind and body. It is caused by a defective gene transmitted from one generation to the next, though some offspring inherit the gene and others do not. There is no cure for Huntington's. The Test is a memoir of the five years Baréma spent in anguish over the decision to take the test that reveals whether he is carrying the gene. Baréma recalls his long, emotionally wrought journey from deciding to take the test to receiving the results; he describes how his daily life was consumed by questions and fear; and he movingly depicts the patience of his wife and the compassion of his doctor. The Test is a suspense story and a vivid portrayal of the devastation Huntington's disease causes the families it strikes. Ultimately, it is a book about the power of hope and love to reach us even in our lowest moments.

 


"This moving memoir confronts head-on one of the hardest issues presented by new medical technologies ... 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." —Publishers Weekly.

 


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