My Waking Life

A little while back I had the pleasure of spending the day with Kailey Profeta, a 16-year-old with the chronic sleep disorder Narcolepsy.  The condition is characterized by excessive daytime sleepiness in which a person experiences extreme fatigue and can fall asleep at inappropriate times.  She experiences disturbed nocturnal sleep and also abnormal daytime sleep pattern, which is often confused with insomnia.  When a person with narcolepsy falls asleep or goes to bed they will generally experience the 4th stage of sleep REM (rapid eye movement/dreamings state), within 10 minutes; whereas for most people, this shouldn’t occur until generally 30 minutes of slumber.

Profeta also experiences Cataplexy, a sudden muscular weakness brought on by strong emotions (cataplexy can also sometimes happen without an emotional trigger), which is another common problem narcoleptics will experience. Often manifesting as muscular weaknesses ranging from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually only speech is slurred and vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. In some rare cases, an individual’s body becomes paralyzed and muscles will become stiff.

Despite these physical weaknesses Kailey was one of the strongest people I’ve met in quite some time in the way she deals with her affliction.  Nearly 50,000 people have been diagnosed with narcolepsy in the U.S, but there may be as many as 2.4 million people unknowingly living with it.  Kailey hopes that her story will help others who are coping with the same problems. To see more images and listen to Kailey click here.