The Family That Couldn’t Sleep

FFI is the acronym of a fatal genetic sleep disorder called Fatal Familial Insomnia. Jay Schadler and Laura Viddy best describe the rare disease: “Those affected by FFI are forever trying and failing to fall asleep. The disease steals one’s sleep, mind and ultimately one’s life, and, before dying, one hovers for months in a twilight world.”

29-year-old Cheryl Dinges (left) is one of the members of a family that couldn’t sleep. Her family carries the gene for Fatal Familial Insomnia, such a rare condition that it is believed to affect only 40 families worldwide. Fatal Familial Insomnia killed their mother, grandfather and their uncle. Cheryl Dinges declined to be tested, even if her sister (right) didn’t inherit the mutation. FFI begins with mild twitching, panic attacks and insomnia. In time, patients start to hallucinate and insomnia becomes so severe that they totally lack the ability to sleep. Ultimately, patients develop dementia and, eventually, die. The mutated protein is called PrPSc. If only one of the parents has the mutated gene, there are 50% chances of inheriting and developing FFI.