Cindy's Reviews > The Family That Couldn't Sleep: A Medical Mystery

The Family That Couldn't Sleep by D.T. Max
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Oct 20, 2010

really liked it
bookshelves: non-fiction, science, brainzz, whack-a-doo
Recommended to Cindy by: Petra
Read from April 13 to 20, 2011

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 the title is beset with FFI, fatal familial insomnia, an inherited/genetic prion disease. It's sufferers tend to develop symptoms in middle-age (usually), and die fairly quickly. It's grim: their pupils turn into pin-pricks, they start sweating profusely, and they become unable to achieve any type of restful sleep. Eventually they lose all control, go into mad fits, finally fall into a coma and die. All the while their mind is intact.

The family's biography is only a frame for the rest of the book. In order to explain FFI and how difficult it was to diagnose as a prion disease, you have to understand the history of prion diseases, and the history of the field. Max delves into scrapie, kuru, GSS, CJD, BSE, and other known prion diseases. In some ways, the story of the researchers trying to pin-down this new class of illness was more fascinating than the family that couldn't sleep. There are huge egos, government cover-ups, and other non-science dramas that affect the lives of many people.

I really, really enjoyed this book - Max sets up the story in an extremely engaging way. It reads like a medical thriller - like something out of that TV show Mystery Diagnosis, but on steroids. There are twists and turns to the diagnosis, and a whole lotta shock factor.

And yet I had to dock it a star. I thought there were two questions not just left unanswered, but totally unaddressed. 1) How does a genetic version of a prion disease, like FFI, not cause symptoms until middle-age? Is the disease building up slowly over time, or does something later set it off? 2) How does a simple mis-folding of a protein lead to a swiss-cheese brain? How do you connect the dots from misfolding to erosion of brain tissue and development of plaques.

There's a good chance that there aren't satisfactory answers to either of those questions, but I was hoping Max would at least acknowledge or address them. He certainly didn't shy away from other more technical discussions.

I had just finished the chapters on Mad Cow/BSE/CJD and Max goes into detail about the state of affairs today. Spoiler: it's not good at all, particularly the government's reluctance in the US. British beef is safer than US beef. Scary. My husband and I had already planned on eating beef for dinner - we had some leftover steaks that needed finishing. It certainly gave me pause. I don't eat a whole lot of beef as it is, but I might try to cut back a little more. Prions are just that freaky.
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Reading Progress

04/19/2011 page 201
60.0%
01/29/2016 marked as: read

Comments (showing 1-12 of 12) (12 new)

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message 1: by Dree (new)

Dree Sounds creepy.


Cindy Yeah! Prions really freak me out.

It seems like the Fatal Familial Insomnia of the title is only a small part of the book. The rest is an exploration of other prion diseases. I hope he'll explain how a prion disease can be inherited, but not appear until the middle-50s.


message 3: by Dree (new)

Dree Ok--Mystery Diagnosis is one f my favorite tv shows. Then Oprah bought Discovery Health and totally ruined their formerly good programming :(


Cindy Dree wrote: "Ok--Mystery Diagnosis is one f my favorite tv shows. Then Oprah bought Discovery Health and totally ruined their formerly good programming :("

Oh god, did she? I was wondering what happened to that show! boo, hisss! Watching Mystery Diagnosis always makes me feel really smart when I watch House.


message 5: by Nick (new)

Nick Black great reviews! i assume you've read the emperor of all maladies? i guess i can check myself.


message 6: by Megha (last edited Apr 21, 2011 12:58PM) (new)

Megha Nick wrote: "great reviews! i assume you've read the emperor of all maladies? i guess i can check myself."

Is this the book that won the Pulitzer prize for non-fiction this year?


message 7: by Nick (new)

Nick Black mp wrote: "Nick wrote: "great reviews! i assume you've read the emperor of all maladies? i guess i can check myself."

Is this the book won the non-fiction Pulitzer winner this year?"


if it didn't, it got robbed. google google google yes, it is.


message 8: by Nick (new)

Nick Black Nick wrote: "mp wrote: "Nick wrote: "great reviews! i assume you've read the emperor of all maladies? i guess i can check myself."

Is this the book won the non-fiction Pulitzer winner this year?..."


and if i might say so myself, i wrote a rollicking good review!


message 9: by Megha (new)

Megha Nick wrote: "Nick wrote: "mp wrote: "Nick wrote: "great reviews! i assume you've read the emperor of all maladies? i guess i can check myself."

Is this the book won the non-fiction Pulitzer winn..."


oops! I edited the embarrassing sentence I had first typed somehow (what was I thinking?!). But it is still going to show up in your response.


message 10: by Megha (new)

Megha Off to your review


message 11: by Cindy (last edited Apr 21, 2011 01:10PM) (new) - rated it 4 stars

Cindy No, I haven't read Emperor of All Maladies yet. I had a GR friend read it right after The Immortal Life of Henrietta Lacks. She raved and raved about the both of them.

Clearly I need to read that one soon!


Cindy Brian wrote: "Great review! Sounds like a fascinating book!"

Yeah, it's one I keep thinking about. So many implications of prions. Stupid twisty fuckers.


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