Do people with FFI actually die from lack of sleep, or do they die from the fact that their brain is being destroyed from the inside, one side effect of which is an inability to sleep?
It’s my understanding that like the other prion diseases FFI progresses to profound dementia, and people die from the typical consequences of that, such as malnutrition, pneumonia, and other things that happen when our basic body maintenance systems are not adequately deployed. However given that sleep is one of those basic maintenance activities, it would make sense that lack of it plays a role.
FWIW, Cecil discusses prion diseases (including touching upon FFI) here – although he doesn’t answer the OP’s specific question.
By all accounts that I’ve ever seen (including Cecil’s), FFI and Mad Cow are hideously gruesome ways to go. If you ever find yourself with either of these (or related) diagnoses, you need to seriously consider committing suicide as fast as you can, while you still can.
Awesome.
As if I didn’t already have enough horrible ways to die to worry about.
Yeah. I read a book about FFI (though I don’t remember if it answers the OP’s question). The author had a very hard time getting any of the family’s members to talk about it, because there’s this horrible stigma. They feel that they’ve been cursed to go mad and die at a young age. They don’t really talk about it within their own family, and several members committed suicide when they began to show early symptoms.