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"AWAKEN" Survey Finds Only 50 Percent of Americans Understand Significant Health Impact of Narcolepsy, and Many Physicians Not Comfortable Diagnosing the Sleep Disorder
Date:6/11/2012

the current level of narcolepsy awareness and identify gaps in disease education.

"The AWAKEN findings suggest that serious sleep disorders such as narcolepsy can be easily overlooked by patients and physicians as a result of low awareness or misunderstanding of disease severity," said Russell Rosenberg, PhD, director of The Atlanta School of Sleep Medicine and Technology and current chairman of the National Sleep Foundation. "These data reinforce the need for additional narcolepsy education and support resources to help bridge knowledge gaps and enhance patient care."  

"Narcolepsy can be quite debilitating and impact education, employment opportunities and the personal lives of those who live with it, yet knowledge of the disorder has not kept pace with other chronic conditions of comparable health concern," said Sara Kowalczyk, MA, MPH, president of the Narcolepsy Network. "What's more is that physicians struggle with narcolepsy symptom recognition and therefore may not be initiating important discussions about sleep with their patients."

Specific findings from the AWAKEN Survey reveal:

  • Seventy percent (70%) of adults have heard of narcolepsy – the lowest percentage among a range of diseases, including diabetes, sleep apnea, Alzheimer's, Parkinson's, multiple sclerosis, schizophrenia, restless leg syndrome and cystic fibrosis. 
  • Of those adults who have heard of narcolepsy, only 7% consider themselves "very or extremely knowledgeable" about the disorder.
  • Similarly, only a quarter (24%) of PCPs and nearly two-thirds (62%) of sleep specialists consider themselves "very or extremely knowledgeable" about narcolepsy compared to the other diseases.
  • Even sleep specialists may not fully recognize the symptoms of narcolepsy, with only a fifth (22%) identifying all five symptoms of the disease – excessive daytime sleepiness, cataplexy (sudden loss of muscle
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SOURCE Jazz Pharmaceuticals
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