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Mercies in Disguise recounts one family’s struggle with gaining the medical knowledge that might reveal a dreadful inheritance

Review | Gina Kolata makes a gripping story out of a real-life medical dilemma

Mercies in Disguise recounts one family’s struggle with gaining the medical knowledge that might reveal a dreadful inheritance

Mercies in Disguise
by Gina Kolata
St Martin’s Press

Many readers will finish this book in one sitting, such is Gina Kolata’s mastery of plotting and pace. But more important is the story she tells, about a neurodegenerative disease, mimicking Alzheimer’s and Parkinson’s, that killed member after member of one American family. In the background, she ties in research going back decades on a group of people in New Guinea who were dying of something called kuru (“trembling”). Her story, however, begins with Bill Baxley, who died in 1998 of what doctors said was an anomalous disease, which started with dizziness and progressed to lost coordination. A chance comment by a friend made it apparent Bill’s father had probably succumbed to the same disease. Thus began an endeavour by Baxley’s sons to discover whether they were all destined to die in the same way. Learning they were afflicted by the rare disease, GSS, caused by a gene mutation, did not mean they could stop it killing any more of them, but now they knew they could be tested for it. That’s what a daughter of one of the Baxley brothers decided to do, raising troubling questions about which was the better path to take.

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