Queensland siblings suffer from Fatal Familial Insomnia which prevents deep sleep

A Queensland pair of siblings are taking part in a pioneering study at the University of California after they were diagnosed with a rare ailment. The two, 28-year-old Lachan Webb and 30-year-old Hayley, are suffering from Fatal Familial Insomnia (FFI).

It is a rare, but inheritable ailment that affects less than 10 million people around the world. People with the ailment suffer from damaged nerve cells which cause the development of sponge-like holes in the thalamus, the brain part that regulates sleep. There is no known treatment for the disease, but the ongoing study aims to find a cure, reports The Independent.

People suffering from FFI could not achieve deep sleep which could result in fast mental and physical deterioration. Their bodies could not rejuvenate and the patient feels like he or she has been awake for the past six months.

According to the University of California, San Francisco, FFI is a type of prion disease, which could either be sporadic, genetic or acquired. There are only 28 families in the world, which includes the Webbs of Queensland, with the dominant gene responsible for the ailment. Having one parent with the gene gives the child a 50 percent chance of inheriting and developing FFI. The disease has four stages: progressive insomnia; hallucinations, panic, agitation and sweating; total insomnia; and dementia, total insomnia and sudden death.

They inherited the disease from their grandmother who was diagnosed with FFI when Hayley and Lachlan were teens. Her eyesight failed, she exhibited signs of dementia, was hallucinating and could no longer talk. So far, four of their family members have died from it, and the trend is worrisome because they are dying younger. Besides their grandmother, their mother died from FFI at 61, their aunt at 42 and their uncle at 20.