Because of this I am AWAKEN TO DEATH - I have Fatal Familial Insomnia

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3 years ago

A sleepless night or two due to work or fun cannot be fatal, but months guarantee a certain death

Often people stay awake due to some obligations or worries. But there are also those who stay awake for months due to a rare disease known as fatal familial insomnia (FFI).

Silvano turned 53 when he felt strange symptoms on the cruise that worried him. He noticed that his pupils were unnaturally small and his vision blurred. He wouldn't be so worried if he didn't notice the same symptoms in his father and two sisters at the beginning of the mysterious disease that killed them.

He decided to undergo examinations after returning from the trip, but what he found out only hit him hard.

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"They told me that I would stop sleeping and I would be dead in eight or nine months. They convinced me of that when I drew my family tree and saw someone in each generation who died in a mysterious way," said Silvano.

As he predicted, Silvano died a few years later. The brain was donated for scientific purposes in order for doctors to determine how to fight this disease. His family is now aware that there is a genetic predisposition for this disease to be activated in any of them at any time, writes the BBC.

The illness of this family dates back to the 18th century, but they decided not to let them live in fear and denied the illness until Silvano decided to dedicate himself to it. After his death, the brain was sent to the University of Bologna for examination, but that could not help two relatives who died of the same disease shortly after him.

Brain examination showed that the genetic mutation led to brain damage, and that the symptoms appear in middle age. Protein prion accumulates in certain parts of the brain and poisons neurons in the part responsible for controlling body heat, blood pressure, heart rate and releasing hormones responsible for the feeling of comfort in the body. When this part is damaged, insomnia occurs because everything in the body in charge of sleep is disturbed and the body receives signals that it should stay awake.

Research in this area raises hopes that the disease, which affects 40 families around the world, can be cured. The problem is that family members refuse to do tests and find out if they suffer from this disease because they do not want to live in fear. This is how they know that their chances for a long and beautiful life are 50-50.

Silvan's cousin revealed that for years, since she was a child, she enters her mother's room while she sleeps to check if she is really asleep or just pretends not to worry her.

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