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What a horrible disease. Fatal Familia Insomnia

fatal familia insomnia

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7 replies to this topic

#1 John250

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Posted 30 July 2018 - 11:15 PM


This poor guy



#2 YOLF

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Posted 31 July 2018 - 09:06 PM

Torturous... His last video was a year ago, is he still alive? I'd take a crack at this if he has a 23andMe genotype.

 

Some interesting information here:

https://www.ncbi.nlm...les/PMC5771322/

 

Seems damage occurs near or around the same areas as it does in parkinson's disease and ALZ. 


Edited by YOLF, 31 July 2018 - 09:07 PM.


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#3 John250

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Posted 31 July 2018 - 10:19 PM

Torturous... His last video was a year ago, is he still alive? I'd take a crack at this if he has a 23andMe genotype.

Some interesting information here:
https://www.ncbi.nlm...les/PMC5771322/

Seems damage occurs near or around the same areas as it does in parkinson's disease and ALZ.


He died. I think he made it 2 years. I’m trying to find the article.

#4 ortcloud

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Posted 22 August 2018 - 03:17 PM

The guy was taking 13 grams of fluoride! I guess this is what caused his insomnia and death. I wonder what doctor told him to take a bunch of fluoride and a antibiotic



#5 OP2040

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Posted 22 August 2018 - 05:29 PM

The guy was taking 13 grams of fluoride! I guess this is what caused his insomnia and death. I wonder what doctor told him to take a bunch of fluoride and a antibiotic

 

You have just hit upon a huge pet peeve of mine, so I apologize in advance if this sounds harsh.

 

FFI is a genetic disease with very high, if not 100% penetrance.  His intake of Fluoride or antibiotics has nothing to do with the disease whatsoever.

 

People, especially people on this forum, need to be more compassionate.  We actually control a lot less of our health status than we think, yet the idea here is that if we just do enough interventions, or just take the exact right medical advice everything will be ok.  That's simply not true at all.  Doing all the right things according to the latest guidelines probably lowers your risk and raises your life expectancy only very minimally.  And the latest interventions we all try are just experimental, and may end up doing nothing.

 

Nature sucks and we are programmed to suffer and die, some at a little slower rate than others, and others based on completely random luck of the draw.  There is no room for "...well, if that idiot only did or did not do this, he would be ok"  No room at all. 



#6 John250

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Posted 22 August 2018 - 06:03 PM

You have just hit upon a huge pet peeve of mine, so I apologize in advance if this sounds harsh.

FFI is a genetic disease with very high, if not 100% penetrance. His intake of Fluoride or antibiotics has nothing to do with the disease whatsoever.

People, especially people on this forum, need to be more compassionate. We actually control a lot less of our health status than we think, yet the idea here is that if we just do enough interventions, or just take the exact right medical advice everything will be ok. That's simply not true at all. Doing all the right things according to the latest guidelines probably lowers your risk and raises your life expectancy only very minimally. And the latest interventions we all try are just experimental, and may end up doing nothing.

Nature sucks and we are programmed to suffer and die, some at a little slower rate than others, and others based on completely random luck of the draw. There is no room for "...well, if that idiot only did or did not do this, he would be ok" No room at all.


Is the disease just latent and something needs to bring it on? Like the antibiotic in this guys case?

#7 OP2040

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Posted 22 August 2018 - 07:18 PM

John250,

It is latent in the sense that age of onset is not until you are older.  But, much like Huntington's, if you got the right gene (forget if you need two copies or one),  then you are going to get it no matter what. 



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#8 ortcloud

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Posted 22 August 2018 - 11:22 PM

This is not Fatal Familial Insomnia






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