Rare sleep disorder just as deadly as some cancers

Most people across the nation, including many here in Missouri, have heard of insomnia. It's a common enough condition that most people consider to be relatively benign and more or less treatable in most cases. But for people with Fatal Familial Insomnia, the term benign couldn't be further from the truth, which is likely why the Social Security Administration has this condition listed as a Compassionate Allowance.

Fatal Familial Insomnia, or FFI, is a rare genetic sleep disorder that is caused by a mutation of the PRNP gene. Because it is located on an autosomal dominant gene, a person need only receive the abnormal gene from one parent in order to inherit the disease.

People who have this degenerative disorder may not realize they have a serious medical condition until they reach adulthood, which is when many patients begin exhibiting symptoms. What usually starts as typical insomnia often worsens over time and can lead to vivid dreams without having achieved REM sleep.

Because the disease affects the thalamus, which regulates motor functions and controls sensory perception, people with FFI often experience hallucinations as well as motor and cognitive deterioration. After the onset of the disease, patients typically have six to 32 months before it runs its course, ultimately ending in death.

Because the disease can progress so quickly and has such a tragic outcome, it's not difficult to see why the SSA has included it on the list of Compassionate Allowances. Fast tracking FFI applications could mean the difference between receiving benefits now or not receiving them at all, which may come as good news to any of our readers who may know someone with this condition.

Sources: The National Center for Advancing Translational Sciences, "Fatal familial insomnia," July 3, 2014, Accessed Sept. 4, 2014

The Social Security Administration, "Fatal Familial Insomnia," Accessed Sept. 4, 2014

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