Description |
316 pages : illustrations ; 21 cm |
Summary |
Rough's first-person account of carrying the gene for hypohidrotic ectodermal dysplasia includes monologues by her grandfather Earl, who died when she was a baby. His illness from the genetic disorder--characterized by sparse hair, cone-shaped teeth, inability to sweat, and distinctive facial features, including a deformed nose--is carried invisibly by mothers and passed to sons. Testing for carriers is now possible, and Rough recognizes with excruciating acuteness that, along with the certainty the test confers comes the potential for moral crisis should she and her husband conceive a son. Readers will be moved by her emotional pain, but equally affecting is Earl's. Whether speaking of his siblings' childhood embarrassment about his appearance or his increasing drug use (begun to aid his sleep), which eventually had him stealing his own company's pharmaceutical assets, is the haunting voice of the past that overshadows the present in this compelling read. |
Subject |
Rough, Bonnie J. -- Health.
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Ectodermal dysplasia -- Patients -- Biography.
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ISBN |
9781582435787 |
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1582435782 |
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