Carrier: Untangling the Danger in My DNA

Carrier: Untangling the Danger in My DNA

by Bonnie J Rough
     
 

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When Bonnie J. Rough receives the test results that confirm she is a carrier of the genetic condition hypohidrotic ectodermal dysplasia, or H.E.D., it propels her on a journey deep into her family’s past in the American West.
At first glance, H.E.D. seems only to be a superficial condition: a peculiar facial bone structure, sparse hair, few

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Overview

When Bonnie J. Rough receives the test results that confirm she is a carrier of the genetic condition hypohidrotic ectodermal dysplasia, or H.E.D., it propels her on a journey deep into her family’s past in the American West.
At first glance, H.E.D. seems only to be a superficial condition: a peculiar facial bone structure, sparse hair, few teeth, and an inability to sweat. But a closer look reveals the source of a lifetime of infections, breathing problems, and drug dependency for Bonnie’s grandfather Earl, who suffered from the disorder. After a boyhood as a small-town oddity and an adulthood fraught with disaster, Earl died penniless and alone at the age of 49. Bonnie’s mother was left with an inheritance that included not just the gene for H.E.D., but also the emotional pain that came from witnessing her father’s misery.
As Bonnie and her husband consider becoming parents themselves, their biological legacy haunts every decision. The availability of genetic testing gives them new choices to make, choices more excruciating than any previous generation could have imagined. Ultimately, Carrier is a story of a modern moral crisis, one that reveals the eternal tension between past and future.

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Editorial Reviews

Publishers Weekly
Starred Review.

What is so amazing about Rough's struggle with her DNA destiny is not just the impossibly tough choices she faces in planning her own future, but the raw courage she exhibits in dealing with the choices made by the generations before her. A carrier of the rare genetic condition hypohidrotic ectoderm dysphasia, which condemns sufferers to a lifetime of debilitating infections, chronic respiratory ailments, and recurring skin rashes, Rough reports that her grandfather and brother were scarred by the disease, leaving their wives, mothers, and daughters helpless and angry. She reflects on the story of Earl, her brilliant grandfather, who died a penniless drug addict. In alternating chapters, she writes in the voices of Earl and Paula, her mother. These vignettes serve as poignant portrayals of their pain, not simply because of a crippling disease, but also the powerlessness they feel over it. "Should he just bear all of this?" Earl's wife asks Paula. "Yes," she replies, "for us." This is a story that will resonate for anyone who grew up in a family with a relative suffering from a chronic illness or addiction.
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Kirkus Reviews
In her debut, Rough explores her family's history with a rare genetic condition and how it has affected her life. The symptoms of hypohidrotic ectodermal dysplasia (HED) include the inability to sweat or produce tears, and other physical traits such as sparse hair, few and strangely shaped teeth and dry, nearly hairless skin. In the X-linked form of the condition, the gene is carried by females and manifests in males. The author's grandfather and brother suffered from the condition. Rough's mother is a carrier, and, as she discovered, so is Rough herself. A large part of this highly personal memoir deals with the author's quest to find out more about her HED-affected grandfather, Earl. He underwent a lifetime of breathing problems and constant infections, aggravated by mucous-membrane problems, and likely a suppressed immune system. He also developed a severe drug addiction brought on by the pain of his illnesses. At one point, he was given shock treatments in a psychiatric hospital; later, his wife divorced him. He eventually died at age 49, broke and alone. The author ably shows how HED devastated Earl's and his family's lives, but the story's effectiveness is compromised by some of Rough's stylistic choices-in particular, the narration of much of the story from Earl's first-person point of view. The author also writes that she re-created conversations and details using "disciplined imagination," an odd designation. Nonetheless, Rough a fine writer with a talent for portraying subtle family dynamics. When she writes as herself, she is often quite moving-particularly when she deals with the possibility of passing HED to her unborn child and her pain as she receives the fatefulgenetic-test results. An uneven but often engaging memoir that provides a much-needed window into how serious genetic conditions affect families.

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Product Details

ISBN-13:
9781582435787
Publisher:
Counterpoint Press
Publication date:
04/27/2010
Pages:
324
Sales rank:
916,103
Product dimensions:
5.64(w) x 8.28(h) x 0.83(d)

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