LIFESTYLE

Siblings Diagnosed With Fatal Disease That Will Stop Them From Sleeping Ever Again

Their grandmother, mother, aunt and uncle all died from the condition.

03/05/2016 11:15 | Updated 03 May 2016

A brother and sister have been diagnosed with a rare, hereditary disease that will one day stop them from sleeping and eventually be fatal.

Lachlan and Hayley Webb from Queensland, Australia, are living with Fatal Familial Insomnia (FFI), which affects less than one in 10 million people worldwide.

The condition, which has no known treatment or cure, prevents sufferers from experiencing deep sleep.

As a result, their mind and body cannot rejuvenate and therefore deteriorate rapidly. 

Lachlan, 28, and Hayley, 30, recently appeared on Australian TV show Nine News to raise awareness of the condition.

They spoke of how their mother died from FFI aged 61, while their aunt died from it aged 42 and their uncle died after suffering with the condition at just 20 years old. 

According to The Independent, Hayley, who's a Nine News reporter, said: "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."

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According to the Genetic and Rare Diseases Information Centre, FFI occurs when abnormal proteins clump together and accumulate in the brain, leading to tissue damage.

The first symptoms of FFI usually begin in mid-life and may include insomnia that worsens over time and vivid dreams when sleep is achieved.

These symptoms may be followed by high blood pressure, episodes of hyperventilation, excessive tearing and sexual and urinary tract dysfunction.

As the disease progresses, most affected people develop ataxia - the loss of full control of bodily movements.

Lachlan and Hayley are currently participating in a study at the University of California led by researchers Eric Minikel and Sonia Vallabah, who are trying to find a cure for the disease. 

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