Adjust Font Sizing:

New Survey Identifies the Need For Increased Education and Treatment Options for Narcolepsy

October 10th, 2018

Results of a survey of those living with narcolepsy, treating physicians, and the general public, bring attention to the impact of the disorder on daily life. The Know Narcolepsy survey, conducted by Versta Research among a total of 1,654 respondents on behalf of Harmony Biosciences LLC, in collaboration with Narcolepsy Network, highlighted that narcolepsy is life-changing for the majority (86%) of those surveyed living with the disorder. However, 78% of the general public surveyed agreed they have no idea what it must be like to live with narcolepsy.

Results from those who are living with narcolepsy:

  • Over two-thirds (68%) agreed they never feel like a normal person because of the disorder and 80% said living with narcolepsy is a daily struggle.
  • More than half (54%) agreed narcolepsy controls their lives.
  • 76% said the narcolepsy has affected important moments in their lives.
  • More than a third (37%) reported having failed a class at school or withdrew entirely because of narcolepsy.
  • One in four (25%) said they have been fired from a job or demoted because of issues related to narcolepsy. For those who are currently employed, a majority (66%) reported that they feel worried about losing their jobs because of narcolepsy.

The survey also highlighted the complexity of the disorder and challenges in symptom recognition and diagnosis. According to people living with narcolepsy surveyed:

  • The journey to diagnosis can be long. On average, it took over 6 years to be diagnosed following the onset of symptoms.
  • Four out of 10 (38%) were initially misdiagnosed with another condition, most commonly (25%) with depression.
  • According to literature, about two-thirds of people living with narcolepsy have cataplexy, a sudden and brief loss of muscle strength or tone brought on by emotions or situations. Yet, only a quarter of those living with narcolepsy surveyed (26%) reported having cataplexy to their physician, and over half (54%) reported knowing little to nothing about cataplexy.
  • Nearly everyone surveyed (94%) agreed there is more to be done to improve communication and further education.

Even with treatment, people living with narcolepsy continue to feel the impact of their symptoms. Nearly all (94%) of people living with narcolepsy said they believed there is a need for more treatment options.

When asked about their biggest frustrations with medications for narcolepsy symptoms, 56% said side effects, 46% said a loss of efficacy over time, 20% said inconvenient to take, and 17% said worries about abuse.

One in eight (12%) agreed their narcolepsy symptoms are completely or mostly under control.

Consistent with responses from people living with narcolepsy, nearly all of the physicians surveyed (94%) agreed that there is a need for new and better treatment options, and more than nine out of ten (95%) said that medications offering new mechanisms of action would be valuable to them.

For more information about the survey or the results, see this link in Sleep Review.

# # #
Date Created: October 10th, 2018
Last Updated: December 8th, 2020