People with Narcolepsy Face Misdiagnosis

WORCESTER, Mass.,   Comprehensive results from new research, the Burden of Narcolepsy Disease (BOND) study – the largest of its kind – indicate that the sleep disorder narcolepsy has a significant impact on both the people living with the condition and our healthcare system.

Specifically, the BOND data found:

  • People with narcolepsy, with or without cataplexy (muscle weakness), were more likely to experience an increased rate of comorbidities, including mental illness, endocrine disorders, digestive disorders and cardiovascular disease when compared to the general population.
  • People with narcolepsy experience significantly higher health and medical costs compared to the general population.

These data, supported by Jazz Pharmaceuticals plc (Nasdaq: JAZZ), were presented at SLEEP 2013, the annual meeting of the Associated Professional Sleep Societies LLC (APSS), held in Baltimore, MD, June 1-5.

“This important new study creates a far-reaching call to action for increased awareness and recognition of the symptoms and co-morbidities of narcolepsy, for better and earlier diagnosis, and for more regular screenings,” said Monica Gow, Wake Up Narcolepsy executive director and co-founder.

Additional Research Reported

Results from two additional surveys presented at SLEEP 2013 characterize the impact that narcolepsy, as a misunderstood and under-diagnosed medical condition, has on patient care. The Awareness and Knowledge in Narcolepsy (AWAKEN) survey found that almost a quarter of 100 sleep specialists and more than half of 300 primary care physicians surveyed are not comfortable diagnosing narcolepsy.

Results from the Patients’ Journeys to a Narcolepsy Diagnosis survey of physicians characterize the many challenges patients must overcome and indicate that patients often go through multiple misdiagnoses and physician visits before reaching an accurate narcolepsy diagnosis. These data suggest that a patient’s journey to diagnosis may take almost two years, and require multiple physician visits and misdiagnoses.

“Jazz Pharmaceuticals plc continues to support ongoing narcolepsy research, such as BOND and AWAKEN, and hopes that awareness of the data presented at SLEEP 2013 will help sleep specialists, physicians and the general public better understand narcolepsy as a serious disabling medical condition,” said Jed Black, M.D., Vice President, Sleep Medicine, Jazz Pharmaceuticals, and Consulting Associate Professor, Stanford University Medical Center, Stanford Center for Sleep Sciences and Medicine.

About Narcolepsy

Narcolepsy is a serious, chronic disorder of the central nervous system characterized by symptoms of excessive daytime sleepiness (EDS), muscle weakness (cataplexy), disrupted nighttime sleep, hypnagogic hallucinations and sleep paralysis. People with narcolepsy experience abrupt shifts between wakeful and REM-like states that are thought to be caused by a loss or impairment of hypocretin-producing neurons in the hypothalamus. The disorder affects approximately one in 2,000 Americans, yet approximately 50% of patients remain undiagnosed. Symptoms of narcolepsy often start between the ages of 15 and 25.

About Wake Up Narcolepsy

Wake Up Narcolepsy (WUN) is a 501(c)(3) nonprofit organization working to improve the quality of life for people everywhere living with narcolepsy. WUN carries out its mission by:

  • Providing funding to accelerate a cure for narcolepsy.
  • Sponsoring initiatives to enhance public awareness of the disorder.
  • Decreasing time-lapse from symptom onset to proper diagnosis.
  • Providing supportive resources for people with narcolepsy and their loved ones




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