Narcolepsy is often called a rare condition, but it’s not as uncommon as you might think. About 1 in 2000 people in the US is estimated to have narcolepsy. Here's how that compares to some other conditions you may have heard of:
*ALS = amyotrophic lateral sclerosis. Also known as Lou Gehrig’s disease.
Unfortunately, narcolepsy does not get as much attention as many other conditions and is not on most people’s radar—and that includes most doctors. This low recognition likely contributes to its underdiagnosis.
It’s estimated that about 50% of people with narcolepsy are not yet diagnosed.
More than half of people with narcolepsy say that their symptoms started before age 18. However, it can take as long as 10 or more years to get an accurate diagnosis, and people with narcolepsy can see an average of 6 different doctors before getting an accurate diagnosis. Sadly, in children and adolescents, narcolepsy can often be mistaken for laziness or lack of motivation.
Undiagnosed narcolepsy can contribute to problems not only in childhood but throughout a person’s life.
Children can suffer many years without a diagnosis.
Narcolepsy is often misdiagnosed as other conditions that can have similar symptoms, including: