Fatal Familial Insomnia, A Death Sentence?


Sometimes we all feel down and depressed. But just realizing there are people in this world that are worse off than us always makes us count our blessings.

So next time you’re tossing and turning and wishing for sleep, tune in to this story. It’ll make you realize how lucky you are.

No matter how bad our sleeping problems cause us to feel, there are ways to overcome them. It can be as simple as reducing the stress in our lives or as complicated as needing several visits to a sleep clinic. You may have heard the saying, “Nobody ever died from lack of sleep”. However that’s simply not true…

Fatal Familial Insomnia, or FFI, is a rare genetic disease that runs in families. Those unfortunate enough to develop this disease have between seven months to three years left to live – if that’s what you can call it. There’s no relief and no cure.

Symptoms of fatal familial insomnia.

The age that FFI strikes can be as early as thirty, though between forty to sixty is more common. The first symptoms are frequent bouts of insomnia and fatigue, although these usually go unrecognised. Some sufferers experience phobias or panic attacks due to the lack of deep sleep. This is the first stage of this dreadful disease.

Fatal familial insomnia then takes it’s victims through worsening panic attacks and strange phobias. Sufferers are caught in the hinterland between sleep and wakefulness. Because the brain is deprived of sleep, hallucinations develop and bodily functions can start to break down. Sleep medications just make the symptoms worse.

From then on it’s a constant decline of both physical and mental health. The victims lose a lot of body weight and also loose the ability to communicate. In the final stage sufferers cannot speak or walk and experience incontinence. Finally they lapse into a coma and die.

Although FFI has been around for many generations, it’s only recently been recognised, previously diagnosed as mental illness. The only hope of a cure depends on gene therapy, a new therapy which has yet to prove itself.

The theory is locating a faulty gene which leads to the development of FFI and replacing it with a normal gene. Although this seems fairly cut & dried, the normal gene hasn’t yet been isolated.

In order for gene therapy to work, people who are at risk need to be tested before they reach childbearing age to avoid FFI being passed on to the next generation. A cure therefore rests on not just the identification of the genes, but the willingness of likely victims to come forward for testing.

Research marches on in the hope of finding a cure. Benefits may also involve those suffering from Creutzfeldt-Jacob (mad cow) and other similar genetic diseases.

Many thanks must go to the family members, both alive or dead, for their willingness to participate in the research into FFI to help others avoid the suffering they themselves had to experience. Their courage hopefully will lead the way to a cure in the not too distant future.