Fatal Insomnia

Most people have dealt with insomnia to some degree in their life, rather small or big. It's something I have struggled with my whole life. My worst struggle I've ever had with it was about five years ago. I was in the ICU recovering from surgery where they had to remove my carotid artery due to cancer.


When I had woken up from the surgery I couldn't talk, I couldn't move. I had a fever that was so high that it almost killed me a couple of times. I was hooked up to feeding machines and breathing machines and had no way of communicating to others. The anxiety of it all was almost worse than the pain.


For twelve days I didn't sleep, and had no way of expressing what was happening to me to others. I remember telling myself I wouldn't wish this on my worst enemy, but even that didn't do it justice. I wouldn't wish it on the worst person that had ever existed. It was the hardest thing I've ever been thru, and it was only twelve days. Those twelve days seemed like an eternity.


Fatal Insomnia isn't that though. It's actually something much worse. Fatal Insomnia or Fatal Familial Insomnia as is its official name, is a very rare yet very real disease. It starts off slow but eventually the person with this condition will never sleep again. Once they stop sleeping all together, it takes about eight months to kill them. Eight long months of suffering, and I imagine it is probably the worst thing one could ever die from. From my own short experience with insomnia the suffering must be unimaginable.


The last three months from what I've read are the worst, where demensia kicks in. It's heartbreaking to know that there are people who die this way. If there is something we should try to cure,I would put this at the top of the list.


The only good take away from it, is that it is very rare. From what we know it is a genetic disease that usually affects a whole family and not many. The only way to find out if one has it is to see a geneticist, a simple blood test won't do. And before they would give them the results the person must go through a mental evaluation to ensure they could handle such a diagnosis. That is how bad the death is.


I've watched a few videos on youtube where people with this condition try to document their story, but could never make it through them due to how graphic this disease is, and probably a little due to my own trauma that I've experienced. I will be including a short documentary that I did completely watch, which is very educational, that follows two families that have it in their genetics. My heart goes out to them, and I hope we find a cure.



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