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Narcolepsy Is Often Misunderstood,
Misdiagnosed, or Simply Missed

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:

  • Parkinson’s disease: 2-4 in 2000 people
  • Multiple sclerosis: about 3 in 2000 people
  • ALS*: about 1 in 20,000 people

*ALS = amyotrophic lateral sclerosis. Also known as Lou Gehrig’s disease.

Narcolepsy Is Often Misunderstood

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.

Children with narcolepsy are especially at risk for delays in diagnosis

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.

Want more information about
narcolepsy in children?

Learn about pediatric narcolepsy
Suspect narcolepsy symptoms?

Misdiagnosis of people with narcolepsy

Narcolepsy is often misdiagnosed as other conditions that can have similar symptoms, including:

  • Depression
  • Anxiety
  • Other psychologic/psychiatric disorders
  • Insomnia
  • Obstructive sleep apnea
  • Attention deficit hyperactivity disorder (ADHD)
  • Learning difficulties
  • Epilepsy
  • Chronic fatigue syndrome

Recognizing narcolepsy symptoms is key

Know the symptoms of narcolepsy
Suspect narcolepsy symptoms?
"They would just say, 'Oh, well, he's a growing boy.'"Watch Kiah's mom explain how doctors kept insisting that nothing was wrong.
"We went to doctors for a long time, and they kept
telling me that nothing was wrong with me."
Listen to patients with narcolepsy describe their journeys through many doctors and many diagnoses.