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The Family That Couldn't Sleep: A Medical Mystery

3.90  ·  Rating details ·  4,814 ratings  ·  412 reviews

For two hundred years a noble Venetian family has suffered from an inherited disease that strikes their members in middle age, stealing their sleep, eating holes in their brains, and ending their lives in a matter of months. In Papua New Guinea, a primitive tribe is nearly obliterated by a sickness whose chief symptom is uncontrollable laughter. Across Europe, millions of

Hardcover, 299 pages
Published September 5th 2006 by Random House (NY) (first published January 1st 2006)
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3.90  · 
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 ·  4,814 ratings  ·  412 reviews

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Lynne King
I reread this review today (1st March 2014) that I wrote last year because a friend, of a friend of mine, has died from Prion's disease and has lost two siblings in the past year. How dreadful...I must reread this book.

* * * * * * * * *

I have a problem and it concerns books. If I see a title that sparks my curiosity, I must have it. I can normally keep this under control but then an enemy was unleashed in the form of my Kindle Paperwhite in February 2013. As a consequence, one click on Amazon a
Jan 01, 2014 rated it really liked it
Prions. Before reading The Family That Couldn't Sleep, I had no idea what those were. Since finishing this book, I've developed an equal sense of respect and fear of them. "Prions are ordinary proteins that sometimes go wrong, resulting in neurological illnesses that are always fatal. Even more mysterious and frightening, prions are almost impossible to destroy because they are not alive and have no DNA." How's that for a mouthful?

At the center of this book is a Venetian family with a deadly leg
Oct 20, 2010 rated it really liked it  ·  review of another edition
Recommended to Cindy by: Petra
Prion diseases are freaky! That little bits of proteins could mis-fold, and that topological change could decimate a brain is just bizarre. One of the facts I was most surprised by is that prion diseases have three methods of infection: genetic, direct contact (i.e. eating or touching infected tissue), and spontaneous (i.e. a protein accidentally misfolds in the body). No other disease vector can spread via all three methods like prions. They are freaky disease superstars!

The Italian family in t
Anita Dalton
The family that could not sleep is a family in Italy that suffers from a disease called Fatal Familial Insomnia. There are several other families in the world affected by the condition, so it is extremely rare. It is a condition that strikes family members generally in late middle age and causes them to begin to lose physical control of their bodies as they stop sleeping. They sweat, they develop a very distinct pinprick appearance to the pupils in their eyes, they stop sleeping, and in end stag ...more
Oct 12, 2009 rated it really liked it
Recommends it for: Readers of Non-fiction Science and Medicine
Recommended to Richard by: Down to a Science Science Café

Every time I donate blood (and I've donated well over ten gallons) I'm asked whether I've spent at least three months in the U.K. prior to 1996 (c.f.). This is because of what we all called "Mad Cow Disease" and what the medical folks now call Variant Creutzfeld-Jacob Disease (vCJD).

This book is poorly titled. Certainly, the horrible fate of an Italian family brings immediate human pathos to the story of prion diseases, but the more pressing story for many of us will be the atrocious practices
Nov 19, 2014 rated it it was ok
Shelves: health, science
I learned a lot about prion diseases from this book, but it suffers from some major issues:

1. It is poorly organized. The chapters alternate between telling the story of the "family that couldn't sleep"--an Italian family suffering from Fatal Familial Insomnia, or FFI--and covering the history of prion diseases & research. That would be fine on its own if there was still some kind of timeline holding everything together, but there isn't: one chapter will discuss prion research from 1970-2004
Dec 22, 2009 rated it it was amazing
Recommends it for: Everyone, Social Scientists Interested in Science
This book ranks with A Short History of Nearly Everything and Animals in Translation as one of the best pieces of science writing I have ever read and I highly recommend it to everyone.

The book covers all aspects of prion diseases, the most famous of which is Mad Cow Disease (aka Bovine Spongiform Encepholopathy). I have a sort of superiority complex fascination/horror with BSE; as a vegetarian for the past 17 years I feel relatively safe from it. Prions are especially terrifying foodborne illne
Petra X
Jan 27, 2009 rated it it was amazing
This stunning book is about a very rare inherited neurological disease which strikes in middle age and one of whose main symptoms is the inability to sleep which quite quickly leads to death. The book is written in a very readable way and follows one family, the main family who suffer frm this terrible disease.
Paquita Maria Sanchez
Seriously terrifying.
Oct 27, 2007 rated it it was ok  ·  review of another edition
Shelves: audiobook, science
This is based upon the audio download from [].

Narrated by: Grover Gardner

Like a smart consumer in the market for electronics, appliances or cars, I research my purchases by looking up recommendations on Consumer Reports. When I am looking for a good book to read, I turn to my trusted source for reviews—Goodreads. Based on member recommendations, I know going in that the book I choose will more than likely receive a higher than average rating from me. You guys have never let me do
May 13, 2007 rated it it was amazing
I'll try not to give 5-star ratings willy-nilly, but this was a pretty amazing family biography, spanning centuries' worth of generations and shedding light on a variety of subjects through the lens of this bizarre and incredibly rare genetic disease. Agriculture, attitudes toward disease, the relationship between science and doctors, the mysterious biological function of sleep, international politics, economic competition and, of course, personal profiles of the afflicted. The drama of the curr ...more
Talulah Mankiller
Apr 22, 2010 rated it liked it
This review has been hidden because it contains spoilers. To view it, click here.
Jul 29, 2018 rated it it was amazing
Excellent non-fiction that reads like a thriller and gives you a good review of the history of prion research, the development and spreading of prion diseases in animals and humans and the scientific aspects of the discovery and treatment of prions. It's fascinating, super-scary and even moving. Daniel Max the writer is emotionally invested in the issue and it shows. The writing is far from dry, and is full of compassion towards the people who have suffered from these diseases and their relative ...more
I enjoyed this book, but there's one part of it I don't understand. If you can point out what I'm missing please do so - it's been a while since I studied genetics.

The book says that the gene encoding the "prion gene" involved in CJD/kuru/FFI has two alleles. One codes for a methionine at a particular site and the other codes for a valine in the same position. If you have two copies of the same allele, one maternal and one paternal, you are homozygous. If you have one of each kind, you are heter
Apr 07, 2009 rated it really liked it
You, too, will have trouble sleeping after you read this book.

This is a true-medicine thriller that leads the reader through the investigation of prion diseases, with surprising revelations along the way. The mysteries include a wasting brain disease that plagues an Italian family for generations, an epidemic of a similar disease called "kuru" found in a remote tribe in New Guinea; and the origins of prion diseases in sheep and cattle.

The book also introduces us to the scientists who are resear
Sep 30, 2015 rated it really liked it
Subtitle: A Medical Mystery. The family of the book's title has a curse worthy of a novel from Poe or Lovecraft. Around middle age or later, apparently healthy men and women (going back at least six generations) will first notice that their pupils are constricted to tiny points, and that they have trouble sleeping. As the disease, for which no treatment is known, progresses, they will become ever more desperate for sleep, and unsurprisingly (perhaps in part as a result) less and less sane. The d ...more
Gilda Felt
Feb 17, 2019 rated it it was ok
I vividly remember when the mad cow scare started. No one knew what it was or where it came from. I think most figured it was like AIDS, an old disease that had recently jumped from another species. But then more was brought out about kuru and scrapie, and it became apparent that, whatever it was, it had been around for a long time.

That history is explored here, starting with fatal familial insomnia, which I had never heard of, to the chronic wasting disease which is decimating deer herds, which
Oct 31, 2014 rated it it was amazing
Sadly, I waited a week to write my review, when I should have written it immediately upon completing the book when I was full of emotional and intellectual reactions to the ideas contained in the book. With that said, I HIGHLY recommend it, as it's a fascinating read, and despite the topic being rather academic, it reads almost like a novel. Very well written.

The book is basically about protein diseases (almost all of which are brain-based, if not all?). It focuses on one where the prion protein
Dec 14, 2007 rated it liked it  ·  review of another edition
Shelves: read-in-2007
This account of prion-based spongiform encephelopathic diseases covers a lot of ground: the Italian family of the title suffering from FFI (fatal familial insomnia), the mysterious epidemic of kuru among the Fore tribe of New Guinea, eventually linked to the practice of eating their dead ancestors' brains, the rare genetically transmitted Creuzfeldt-Jacob disease (CJD), various animal spongiform encephelopathies, from scrapie in sheep to mad cow disease to chronic wasting disease in deer. All of ...more
Jamie Collins
Feb 17, 2012 rated it really liked it
An interesting book about the discovery of the cause of prion diseases, such as “mad cow” disease and the fatal familial insomnia which afflicts the titular Family. The book meanders around quite a bit, and ends with a chapter about the author’s own neurodegenerative disorder.

We learn the history of the Italian family whose members are at risk of dying a horrible death in middle age - long after they have already passed the genetic defect on to some of their children. It’s a little disturbing to
Dec 18, 2011 rated it it was amazing
I first studied prion disease in a virology class during my last year of university. I must have enjoyed them because it was one of the only topics that kept my attention and prevented me from daydreaming like I usually did during that class. Because of this, I was familiar with the disease FFI (fatal familial insomnia). I find it so interesting that there are people who literally can't sleep. I know insomnia affects millions and decreases quality and quantity of sleep, but sufferers of FFI lite ...more
Oct 06, 2010 rated it liked it
Fatal familial insomnia is my favorite medical disorder because it's so creepy & inexplicable. Now I think I'll have to include all prion diseases in as well. Unkillable, ineradicable, misfolded proteins that eat your brain. If you liked that X-Files episode where the workers at the chicken plant all went nuts because they were cannibals, you may like this book. It certainly provides one with yet another reason not to eat a hamburger.
Dec 27, 2008 rated it it was amazing
I will not forget this title soon. The horror of the familial genetic sadness of this disease is momentous. As we have begun to decipher and advance in genetic medical research it becomes clear to me that genetic disorders define us as humans to huge degree. If we can learn more - we will create more treatments and cures.
Feb 08, 2010 rated it really liked it
This was really interesting. It was all in layman's terms and easy to follow. I feel like I learned a lot from this book. It balanced medical theory, fact, and case examples well. I found the FFI information really fascinating. CJD made me a little nervous, I'm afraid to say...
Sally Cartwright
Jan 05, 2017 rated it liked it
An interesting book that's well explained despite the complexity of the subject matter (proteins in DNA, chromosomes etc). It's an unusual and thought provoking read....
Gabriel Avocado
Jun 14, 2018 rated it it was ok
Shelves: science-medical
interesting read. its actually a misleading title: this is more about a history of prion diseases than specifically about that family suffering from an incurable insomnia. i love pop history books but i wish they wouldnt gloss over a lot of the awful racist imperialism in medical history. this book also downplays heavily the fact that one of the men critical to the discovery of prions was a pedophile and kidnapped (because thats what it was) preteen polynesian boys to rape in the US, where they ...more
Mar 02, 2017 rated it really liked it
This is from 2006, and maybe a bit dated...for "mad cow" and CJD no longer make the headlines. But it's but still a quick fun read-- something I really could gork out on. The family drama was minimal, making the whole story less unwieldy than say "One in a Billon" or perhaps "Mercies in Disguise". Max clearly explains the science and unfortunate family- weaving in slices of his own medical woes. I looked Max up today and was thrilled to see that he was still alive and wrote the DFWallace bio "Ev ...more
Leonid Levchenko
Dec 08, 2018 rated it it was ok
The eponymous family history was the least interesting portion to me.
Abby Teague
Dec 04, 2018 rated it it was amazing  ·  review of another edition
So many terrifying ways a minuscule bit of your body can turn lethal. I no longer want to eat, drink, breathe or exist as it can all go wrong in an instant.
Dec 29, 2017 rated it really liked it
Muy, muy interesante, aunque ahora creo que voy a morir de una enfermedad priónica.
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D.T. Max is a staff writer for the New Yorker. He lives outside of New York with his wife, two small children and rescued beagle who came to them named Max. He is the author of The Family That Couldn't Sleep: A Medical Mystery (Random House) and Every Love Story Is a Ghost Story: A Life of David Foster Wallace (Viking), to be released in paperback in September 2013.
“Protein, so far as we know, does not replicate itself all by itself, not on this planet anyway. Looked at this way, the [prion] seems the strangest thing in all biology, and, until someone in some laboratory figures out what it is, a candidate for Modern Wonder. (quote originally by Lewis Thomas)” 4 likes
“beef industry, that was very good news. But a few Americans were not reassured. They weren’t convinced the USDA had done what it could to protect them. They knew that the agency’s image as a protector of consumers was part myth, because the” 0 likes
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