Hayley and Lachlan Webb, who are siblings from Queensland, Australia, have a rare and fatal sleep disease that runs in the family. Called Fatal Familial Insomnia (FFI), the brother and sister are aware of the condition as their own mother had it. However, the siblings are feeling a growing uncertainty as there is no definite guarantee when the disease will strike them. Worse, they don't know what will cure this disease.
Australian news program "60 Minutes" dubbed Fatal Familial Insomnia as "The Sleeping Curse," when it ran the story on Hayley, 30, and Lachlan, 28 on Sunday, May 1. Only one in 10 million individuals have this condition and in the Webb family's case, the FFI killed their mother, grandmother, aunt and uncle.
Fatal Familial Insomnia, A Genetic Time Bomb
Daily Mail describes Fatal Familial Insomnia as a "genetic time bomb" because once it manifests, there is nothing a person can do to switch it off. In their teens, the Webbs saw how the rare insomnia affected their grandmother when she started having no sleep. Her condition deteriorated quickly and she died at age 69. This was the first time the family learned of FFI.
Then, the Webbs' mother developed the condition in 2011. Within six months, she succumbed to the disease at age 61. Their aunt was 42 when she passed while their mother's brother suffered and died at age 20.
Fatal Familial Insomnia - siblings. https://t.co/m2CbvgGrnW
— JMB Psych (@JMBPSYCH) May 2, 2016
Fatal Familial Insomnia Causes And Symptoms
Per Rare Diseases, Fatal Familial Insomnia is linked to the brain and nervous system and is likely caused by abnormal proteins that damage the brain tissues. Experts refer to this as a type of prion disease, from which there is no known cure.
The hereditary condition begins to show in mid-life as a regular insomnia. Overtime, the condition worsens and is associated with high blood pressure, hyperventilation, body dysfunction, disorientation and hallucination.
Live Science reports that in 2014, a teenager from North Carolina died from FFI. His case was studied by experts after they learned that that he had been living with slurred speech, dysfunctional body movements and auto-immunity problems for three years. They thought that boy's condition might have been triggered by a concussion from football, but his tests showed that his head and neck were normal.
I learned something cool on the @curiositydotcom app: Fatal Familial Insomnia: No Sleep... https://t.co/UTn8CpWEe5 pic.twitter.com/c6fJYpA56J — Theresa Sanders (@Karmic_star) April 21, 2016
Since the body isn't given a chance to rest, recover and rejuvenate, a person affected with FFI averagely die within a year. The Webb siblings are now taking part in a study at the University of California that should unlock the mysteries of Fatal Familial Insomnia, per Parent Herald. Learn more about this rare genetic disorder in the video below:
