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What is the prevalence of Fatal Familial Insomnia?

How many people does Fatal Familial Insomnia affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Fatal Familial Insomnia

The prevalence of Fatal Familial Insomnia (FFI) is extremely rare, affecting an estimated 1 in every 10 million people worldwide. This neurodegenerative disorder is inherited in an autosomal dominant manner, meaning that individuals with a single copy of the mutated gene have a 50% chance of developing the disease. FFI is characterized by progressive insomnia leading to a complete inability to sleep, accompanied by various neurological symptoms. Due to its rarity and genetic nature, FFI remains a challenging condition to study and treat.



Fatal Familial Insomnia (FFI) is an extremely rare genetic disorder that affects the sleep-wake cycle. It is estimated that FFI occurs in approximately 1 in every 10 million people. The prevalence of this condition is incredibly low, making it one of the rarest diseases known to medical science.


FFI is inherited in an autosomal dominant manner, meaning that if a person inherits the mutated gene from one parent, they have a 50% chance of developing the disorder. The onset of symptoms typically occurs in midlife, between the ages of 30 and 60.


The progression of FFI is relentless and devastating. The affected individuals experience a gradual and irreversible deterioration of their sleep patterns, leading to a complete inability to sleep. This chronic insomnia eventually results in severe physical and mental deterioration, leading to a fatal outcome within a few months to a few years.


Due to its rarity and the challenges in diagnosing FFI, it often goes undetected or misdiagnosed. Genetic testing is crucial for confirming the presence of the specific mutation associated with FFI.


While FFI is an incredibly rare condition, ongoing research and advancements in genetic testing offer hope for better understanding and potential treatments in the future.


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