A Medical Mystery
For more than two centuries, members of an Italian family exhibited a strange form of insomnia that led to exhaustion, suffering, and inexplicable death. The disease was misdiagnosed until the early 1990s, when it was finally recognized to be fatal familial insomnia (FFI), a rare genetic form of a prion disease with no known cure. (A prion, or proteinaceous infectious particle, transmits diseases and is difficult to kill.) D. T. Max uses this Italian family’s tragic history to explore a larger story about other fatal diseases caused by prions—from uncontrollable laughter (a brain-eating illness) in a tribe in Papua New Guinea to England’s mad cow epidemic. Max also introduces the biologists who discovered prions and have tried to find cures for these neurological afflictions, "the worst disease[s] in the world."
Random House. 336 pages. $25.95. ISBN: 1400062454
Los Angeles Times
"Authentic empathy runs through The Family That Couldn’t Sleep, most marked when the author returns, time and again, to the soulful (and brave) Italians referenced in his title. … In reliving their slowly dawning knowledge about generations of parents and siblings and aunts and uncles and cousins forced to suffer agonizing, inexplicable deaths, Max’s readers cannot help but care about Silvano and his kin." Claire Panosian Dunavan
NY Times Book Review
"In this gripping, cleanly written, cannily plotted and elegantly educational book, D. T. Max shows us what happens when the insomnia isn’t ordinary and doesn’t end, no matter how aggressive the medical intervention or generous the sedative prescription. … The book brims with great tales, some tragic, others cautionary, and one soberly confessional." Natalie Angier
St. Petersburg Times
"Max does an amazing job of compressing the science into lucid, conversational English. … While the medical mystery at the heart of this story has stumped many scientists over the years, Max makes the reader feel smart enough to grasp it at once." Tom Valeo
Minneapolis Star Tribune
"If the story slows down with the description of nucleated proteins and how they fold, it is never less than gripping when it returns to the afflicted family. … Max charts the generations of this family and its victims with salient detail and uncondescending sympathy." Emily Carter Roiphe
New York Times
"Mr. Max, who himself has a neuromuscular disorder loosely related to the diseases he describes, wants to make a few political points about the relationship between prion diseases and government agricultural policies. To do this, he spends too much time rehashing the mad cow epidemic, and he offers an account of some possibly suspicious cases of Creutzfeldt-Jakob disease … that rests mostly on unproven suppositions." William Grimes
Framed by the story of one genetically cursed Italian family, The Family That Couldn’t Sleep is a true medical mystery. D. T. Max, who conducted investigative research and interviews, has written a gripping, spooky, educational, and readable book with vast historical and geographic sweep, from 18th-century Italy and England to 1950s New Guinea. Its strong point is the dual focus on the Italian family’s genetic legacy and the scientific discovery of prion diseases. The book wanders when it strays from these subjects, and Max milks too much sympathy for his Italians. Yet if Max stresses that scientists still have a long way to go to alleviate the threat of prions to humans, he also gives reason for hope.