Fatal familial insomnia: what is this nightmarish illness that deprives the body of sleep until death ?

La maladie touche 40 familles dans le monde. MAXPPP – Ketty BEYONDAS

Victoria is part of one of 40 families in the world affected by the disease Fatal Familial Insomnia. An illness which has already caused the death of his mother and brother.

It’s a nightmare disease. Fatal familial insomnia is a rare, genetic condition that affects around forty families around the world. Illness deprives the body of sleep, until death.

"You have a better chance of winning the lottery than of carrying it", explains Victoria, at the microphone of Loopsider. The young woman has already lost her brother and then her mother at IFF.

A few months to live

"The first symptoms were hallucinations" remembers Victoria when discussing the case of his brother. Interned in psychiatry, he will no longer see his sister "until the day before his death".

Rapidly, cognitive functions deteriorate and this causes a loss of coordination. According to Doctissimo, the permanent lack of sleep then ends up plunging the patient into a form of coma linked to significant damage to the nervous system. People affected by this disease only have on average a year and a half to live.

According to the stats, Victoria has a "90 % chance of triggeringr" this disease. For his son, the probability would be 50%. According to Santé Magazine, there is no treatment for IFF, treatment is called symptomatic: this consists of relieving the symptoms of patients so that they suffer as little as possible at the end of life.