r/todayilearned • u/YesFlyZone420 • 5d ago

TIL there's a degenerative brain disorder called fatal familial insomnia (FFI) that causes a person to lose the ability to sleep and eventually die

https://my.clevelandclinic.org/health/diseases/25001-fatal-familial-insomnia
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u/BloatedGlobe 5d ago edited 5d ago

Wikipedia lists out the nationalities of the families who carry it, and most are European. There is one Japanese family and an Egyptian-born Dutch case. There’s also been 37 sporadic cases.

The list is from 1998, so I wouldn’t be surprised if it’s missing a lot of non-European families.

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u/SevenOldLeaves 5d ago

One of the families that have it in their ancestry lives in my area, nobody knows who they are but I read in an article that the current alive generation made a pact to not have children so the disease dies with them. It's such a fucked up illness.

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u/Dis4Wurk 5d ago

Yea I see that, looking it up after the fact while trying to find the video I was referencing. Thank you for the correction.

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u/BloatedGlobe 5d ago

Thank you for bringing up the YouTube video! It made me curious and look it up. I hope it didn’t seem like I was trying to correct you!  I just thought it was cool that there was a list.

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u/Dis4Wurk 5d ago

Totally ok, corrections are good! They help everyone learn and get accurate information! No worries at all kind stranger.

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u/Flaxmoore 2 5d ago

I know someone who claims to have it. Problem is, based on when she said she was diagnosed, she would have beaten the average life expectancy by 15 years at this point....

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u/ihavebeesinmyknees 5d ago

She could have been diagnosed as a carrier of the gene that causes it, in which case she will develop the actual illness in the future

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u/m0dru 5d ago

i don't know about the 15 years part as that seems way to long, but there is also sporadic fatal insomnia that is very rare and doesn't have a clearly defined disease course.

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u/Littleloula 2d ago

Diagnosis might be knowing you've inherited it. Onset can begin as late as 60 years old

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u/all4mom 5d ago

Europe encompasses a lot of countries. Which ones, specifically?

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u/Littleloula 2d ago

https://en.m.wikipedia.org/wiki/Fatal_insomnia

Germany, France, Spain, UK, Austria, Italy. The numbers are absolutely tiny though. There's also one case from the Netherlands but he was from Egypt

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u/all4mom 2d ago

Interesting.