A survey of narcolepsy awareness conducted in the United States and released by Jazz Pharmaceuticals confirms that while the majority of Americans view sleep as highly important, only half (50%) believe narcolepsy can significantly impact overall health, despite evidence that symptoms of this serious sleep disorder can be severe enough to disrupt a person’s social, personal and professional life and limit their activities.(1) Findings further reveal that compared to a set of other diseases of similar concern or prevalence, such as Parkinson’s and multiple sclerosis, narcolepsy was rated among the lowest in severity, and only 55% of adults who had heard of the disease considered it to be “very or extremely serious.”
Results from the “AWAKEN Survey: Awareness and Knowledge of Narcolepsy” also reveal similar perceptions within the medical community, with primary care physicians (PCPs) and sleep specialists rating narcolepsy among the lowest in severity compared to other diseases (75% and 82%, respectively, considered it to be “very or extremely serious”). Physicians also struggle with narcolepsy symptom recognition and diagnosis, with only 9% of PCPs and 42% of sleep specialists admitting they are comfortable diagnosing the disorder. According to current figures, less than half of the estimated 125,000-200,000 people living with narcolepsy have been properly diagnosed,(2) and many are not definitively diagnosed until approximately 10-15 years after the first symptoms appear.(3)
AWAKEN was developed with input from representatives of the narcolepsy community, including leaders of the Narcolepsy Network, Wake Up Narcolepsy and the National Sleep Foundation. Harris Interactive conducted the online survey among 1,000 adults, 300 primary care physicians and 100 sleep specialists in May 2012 to assess the current level of narcolepsy awareness and identify gaps in disease education.