Person tired due to narcolepsy symptoms 2

“Why is narcolepsy so difficult to diagnose?”

The path to diagnosing narcolepsy.

Narcolepsy is a lifelong disorder that is widely underrecognized.1-4

  • Less than half of patients with narcolepsy are estimated to be diagnosed.3
    • More than 50% of patients report symptoms starting before 18 years of age, with a main peak of symptom onset at approximately age 15.5-7
    • Seems to affect both males and females equally.1
    • Identified as the primary sleep diagnosis in about 1 in 20 patients in a sample of US sleep clinics.8
1 in 2000 people in the US have narcolepsy chart 1-2 in 4000 people in the US have narcolepsy with cataplexy chart

People may suffer many years before being diagnosed.3,4,11,12

  • An accurate diagnosis can often take 10 years or more.3,4,11,12
    • In one study, pediatric onset of symptoms was shown to be the strongest predictor of delayed diagnosis.6
    • Narcolepsy can be misdiagnosed as another neurological illness or a psychiatric condition such as major depressive disorder.13-15
    • Narcolepsy can also be present with other sleep abnormalities such as obstructive sleep apnea.16,17
    • Mild- or late-onset cataplexy can also contribute to delayed diagnosis.11

Even diagnosed narcolepsy patients may have unrecognized symptomatology.18

  • Cataplexy can be difficult to identify and may often go undetected.4,19
    • It is estimated that about 70% of patients with narcolepsy may suffer from cataplexy.20
    • Yet in the US, it is estimated that only about 19% of patients diagnosed with narcolepsy have also been diagnosed with cataplexy.18*

Cataplexy in Narcolepsy:

Estimated Prevalence vs Diagnosis13,20

Cataplexy in narcolepsy estimated prevalence vs diagnosis graph

*Based on health claims data showing an estimated 26,754 total patients identified as having narcolepsy as of April, 2015, of which 5180 have been identified as having narcolepsy with cataplexy.18