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The Family That Couldn't Sleep: A Medical Mystery

3.88  ·  Rating Details ·  3,746 Ratings  ·  344 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 ...more
Audio CD, 0 pages
Published September 18th 2006 by Tantor Media (first published January 1st 2006)
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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
Apr 20, 2011 Cindy 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
Jan 13, 2014 Eve rated it really liked it  ·  review of another edition
Shelves: read-2014
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
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
Paquita Maria Sanchez
Jul 23, 2016 Paquita Maria Sanchez rated it really liked it  ·  review of another edition
Shelves: truthiness
Seriously terrifying.
Nov 05, 2016 Richard rated it really liked it  ·  review of another edition
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 i
Nov 14, 2007 Grumpus rated it it was ok  ·  review of another edition
Shelves: science, audiobook
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
Mar 05, 2010 Trena rated it it was amazing  ·  review of another edition
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
May 13, 2007 Gina rated it it was amazing  ·  review of another edition
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
Petra X smoke fish no cigar
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.
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
Nov 19, 2014 Kate rated it it was ok  ·  review of another edition
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
Apr 07, 2009 Lsexton rated it really liked it  ·  review of another edition
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
Talulah Mankiller
This review has been hidden because it contains spoilers. To view it, click here.
Sep 30, 2015 Rossdavidh rated it really liked it  ·  review of another edition
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
Dec 05, 2014 Kristin rated it it was amazing  ·  review of another edition
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 18, 2007 David 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
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
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
Jul 04, 2016 Chloe rated it it was amazing  ·  review of another edition
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.
I wanted to read this because I think FFI is terrifying. The Family that Couldn't Sleep is more about prion diseases in general, with FFI as a thread to which Max returns again and again - I think the NYT article about this Italian family is better as "literature" than the book, which is fine and all. It's an interesting overview, but I wish it had been a little weirder or something. (Not because I want to gawk at people's suffering, but because I think the book could do more to distinguish itse ...more
Claudia Piña

Ya había estudiado los priones antes y por supuesto el Insomnio Familiar Fatal es algo que se estudia siempre en Psicofisiología cuando se tratan temas de sueño. Me habría gustado tener este libro entonces, porque de forma sencilla describe lo básico que hay que saber sobre el tema.

Habla de lo que son los priones, las historia de su estudio y las enfermedades que se pueden producir por ellos, tanto en animales como en personas. Todo llevado con el hilo conductor de la famosa familia italian
Dec 14, 2015 Jen rated it really liked it  ·  review of another edition
Shelves: non-fiction
Although it wanders off into tangents often, this is an excellent book on the history of prion diseases. I have to say though, that after reading it I have little to no faith in the government's ability to protect our food supply. It may help to go vegetarian long before you read this book. Just ew.

I do hope that considerable resources are dedicated to solving the mysteries of protein misfolding. There are still so many questions.

One particular thing that struck me about the Italian family wit
Apr 18, 2016 Kati rated it it was amazing  ·  review of another edition
I had no idea what to expect when I started this book, but D.T. Max delivered an engrossing, informative, and deft history of prion diseases. Don't think you're interested in medical history? I guarantee this book will change your mind. Max's measured approach to explaining complicated medical concepts was refreshing in its simplicity while still giving the reader some credit for her general knowledge of disease and recent world events. Rather than a plodding dissection of research, Max divides ...more
Ixel Santos
This book was great! Especially how it gave tons of details over the prion diseases, how the people died because of the prion diseases, and I especially loved how I felt like I was apart of the scientists. I really enjoyed how I felt like I was experiencing/watching a person with the prions. This book was a great medical mystery! I kind of expected the Venetian family to actually not even want to do anything because of the prions... The family took the news better than I have expected. The infor ...more
Oct 08, 2014 BL834 rated it really liked it  ·  review of another edition
Shelves: non-fiction
3.5 stars, rounded up because I learned stuff. Mostly stuff I'd rather not have known because misfolded prions are the stuff of nightmares.

As others have pointed out, the book is more about the history of the discovery of prions and the researchers involved, with the titular family only taking up a portion of the text. You can't really blame Mr. Max for choosing a more interesting title than "Prions: A History" though.
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.
Jul 18, 2008 Renee rated it really liked it  ·  review of another edition
A fascinating collection of stories and medical cases about various inflictions ranging from a Venetian family whose generational insomnia led to the death of multiple family members to case studies of those affected with Mad Cow Disease. A very interesting look at Prion and how its symptoms are often misdiagnosed as Alzheimer’s disease. A clear history of Prion diseases and our attempts to understand them have been given in this book.
Jul 08, 2014 EJR rated it it was amazing  ·  review of another edition
I really liked this book! I feel like I learned quite a bit about prions... I will probably continue to stay away from red meat. It was fascinating to learn about the inherited prions which I knew nothing about. The information on the animal-related prions was really interesting... shows how much we don't know, and how long it takes to start working on research/putting the pieces together.
Mar 31, 2016 Sara rated it really liked it  ·  review of another edition
Shelves: non-fic
This book was informative as well as entertaining. I liked that Max covered prion diseases worldwide; the differences were as fascinating as the similarities. I learned a lot about prions and prion diseases and am freaked out about eating beef now because prions are crazy-scary and impossible to get rid of.
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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.
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“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
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