This Extremely Rare Disease Keeps You Awake For The Rest Of Your Life


Robin Andrews

Science & Policy Writer

169 This Extremely Rare Disease Keeps You Awake For The Rest Of Your Life
This heriditary condition will eventually kill you.

Not getting enough sleep eventually culminates in a day or two of brain-befuddling wooziness, but it’s nothing compared to the effects of chronic insomnia. This sleep disorder, caused by certain medicines, negative lifestyle factors, physical illness, or mental health problems, it leads to mental fatigue, muscular exhaustion, double vision, hallucinations, and a weakened immune system.

Frighteningly, there is actually something far worse than this: an extremely rare condition that won’t let you properly fall asleep ever again. As reported by the Independent, brother and sister Lachlan and Hayley Webb from Queensland, Australia are just two of those afflicted by the hereditary disease, Fatal Familial Insomnia (FFI), something no more than one in 10 million people worldwide are thought to have.


The disease progressively damages neurons within the thalamus, the part of the brain associated with regulating sleep. When enough of this dual-lobed mass of gray matter is harmed, its ability to keep the subject asleep, or even keep them fully conscious, is severely hampered. Ultimately, FFI prevents subjects from reaching both deep sleep and rapid eye movement (REM)-style sleep, which stops their bodies ever being able to physically or mentally recuperate.



The news report on the Webb siblings. Channel Nine via The Sun


“In my early teens I remember becoming aware of it, aware we had this family curse,” Ms. Webb told Channel Nine news. “My grandma started getting sick and dying. Her eyesight went, she had signs of dementia, she was hallucinating and couldn't talk. Eventually, she was diagnosed with FFI, that was the first time the family even knew that FFI existed.”

Several other members of the Webb family have been killed by the illness, and the two aforementioned siblings aren’t sure when it will eventually end their lives either. At present, FFI has no treatment, and no cure, and the average survival span for patients diagnosed with it is around 18 months. For the last 6 months of a sufferer’s life, they are sent into a delirium-like state akin to those afflicted with dementia.

“I don't want to sit here while the sands through the hour glass pass waiting for it to trigger and for me to cark it,” Ms. Webb added. “I want information, I want answers and I want a bloody cure.”

Researchers, such as Sonia Vallabh and her husband Eric Minikel at the Broad Institute – a collaboration between the Massachusetts Institute of Technology (MIT) and Harvard University – are trying to find a cure for FFI. They were spurred to giving up their former careers and retraining as scientists when Sonia discovered she had the genetic markers of FFI back in 2011.


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