PATIENT RESOURCES

2018 Know Narcolepsy survey of healthcare providers and people living with narcolepsy highlights the need for more education and new treatment options.

0%

n=173
agreed that
the disorder is
life changing

0%

n=135
agreed that they
never feel like a
“normal” person

0%

n=159
agreed that life is
a daily struggle

0%

n=152
agreed that it has
affected important
moments in
their lives

The survey highlighted the complexity of narcolepsy and challenges in symptom recognition and diagnosis. For people living with narcolepsy surveyed, it took 6 plus years on average to receive a diagnosis following the onset of their symptoms. Even after receiving a diagnosis, many people living with narcolepsy continue to feel the impact of their symptoms.

0%

n=130

reported social changes, like not going out as much to events, dinners, movies, and family events

0%

n=71

reported physical changes, like changing jobs, moving, and being unable to cook or bathe when no one is around

0%

n=57

reported emotional changes, like not showing emotions as much
People with narcolepsy cited behavior and perceptions of other people as being among the biggest challenges of living with the disorder. 72% reported that they avoided telling people they have narcolepsy. When they did, two-thirds agreed they believed people were skeptical. 1 in 4 reported having been fired from a job or demoted because of problems related to narcolepsy. 37% reported having failed a class at school or withdrawing entirely because of narcolepsy symptoms. 84% of physicians and 74% of people with narcolepsy agreed that social media and entertainment industry have a distorted view of narcolepsy. Over 2/3 agreed that people don't take narcolepsy seriously.
Survey infographic created by Know Narcolepsy, Harmony Biosciences, and Narcolepsy Network
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