Fatal Familial Insomnia (FFI): Rare Disease That Will Keep You Awake All Your Life


Scientists have delved into research for a possible cure of an extremely rare and fatal disease called Fatal Familial Insomnia (FFI) which has stopped these siblings; Hayley (30 years) and Lachlan (28 years) Webb, from enjoying a wink of a good sleep.

Sleeping is the best remedy for the entire body to recuperate from all activities and not getting at least six hours sleep after a day or two will surely lead to brain-befuddling wooziness. There are sleep disorders chronic Insomnia, caused by certain medicines, negative lifestyle factors, physical illness, or mental health problems, which leads to mental fatigue, muscular exhaustion, double vision, hallucinations and weak immune system.

This Fatal familial Insomnia FFI, is far worse; it won’t let you get proper sleep ever again.

Effects of Fatal Familial Insomnia (FFI)

According to scientific description, 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.

This Rare Disease, FFI Keeps You Awake For The Rest Of Your Life
Hayley and Lachlan Webb

Hayley and Lachlan Webb inherited the disease from their family, their grandmother also suffered and died of the illness. The siblings described the effects and are determined to find a cure.

Ms. Webb told Channel Nine news:

“In my early teens I remember becoming aware of it, aware we had this family curse. 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.

Presently, 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 (a decline in mental ability).

“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 itI want information, I want answers and I want a bloody cure,” Ms. Webb added. 

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.