Narcolepsy Is Often Misunderstood,
Misdiagnosed, or Simply Missed
Narcolepsy is a rare condition. 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.
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. Low awareness of narcolepsy symptoms likely contributes to its underrecognition.
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 some people may have about 6 doctor visits before their symptoms are recognized as narcolepsy. 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.
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
telling me that nothing was wrong with me."Listen to patients with narcolepsy describe their journeys through many doctors and many diagnoses.