“It's hard to tell where narcolepsy ends and where I begin.” – Nicki

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The Impact of Narcolepsy

Narcolepsy and its impact are often misunderstood.

Narcolepsy symptoms can disrupt everyday life. But people living with narcolepsy and those around them may not realize the impact. Results from the Know Narcolepsy Survey may help people understand the impact of narcolepsy.

Matt How to explain narcolepsy video
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How to Answer, “What is Narcolepsy?”

Matt, 37 years old
Living with narcolepsy with cataplexy

What is narcolepsy? Getting other people to understand the impact of narcolepsy symptoms is not easy. Hear Matt describe how he explains his narcolepsy symptoms to others.

Matt How to explain narcolepsy video
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Leah Social impact of narcolepsy video
Watch Video
Matt How to explain narcolepsy video

Leah Social impact of narcolepsy video

How to Answer, “What is Narcolepsy?”

Matt, 37 years old
Living with narcolepsy with cataplexy

What is narcolepsy? Getting other people to understand the impact of narcolepsy symptoms is not easy. Hear Matt describe how he explains his narcolepsy symptoms to others.

How to Manage the Social Impact of Narcolepsy

Leah, 24 years old
Living with narcolepsy with cataplexy

Leah shares the impact of narcolepsy on her social life. If things don’t go as planned, she remembers that every day is a new opportunity.

Everyday Challenges

Excessive daytime sleepiness (EDS) can be a daily obstacle. It can affect routine activities such as exercising or cooking. Partial cataplexy, like jaw sagging or difficulty speaking, can have emotional and social consequences for people living with narcolepsy. Some may suppress their feelings or skip activities to prevent an attack and avoid embarrassment.

Leah Social impact of narcolepsy video
Watch Video

How to Manage the Social Impact of Narcolepsy

Leah, 24 years old
Living with narcolepsy with cataplexy

Leah shares the impact of narcolepsy on her social life. If things don’t go as planned, she remembers that every day is a new opportunity.

Everyday Challenges

Excessive daytime sleepiness (EDS) can be a daily obstacle. It can affect routine activities such as exercising or cooking. Partial cataplexy, like jaw sagging or difficulty speaking, can have emotional and social consequences for people living with narcolepsy. Some may suppress their feelings or skip activities to prevent an attack and avoid embarrassment.

Narcolepsy is a real neurologic condition and an invisible illness that severely impacts the individual diagnosed along with family and friends.

Sharon, 43 years old, living with narcolepsy with cataplexy

Your
Narcolepsy Symptoms

Narcolepsy assessment tool thumbnail

Could narcolepsy be interfering with your daily activities or enjoyment of life?

This tool may help you better understand the impact narcolepsy symptoms may be having on your daily life. Take this assessment a few times each year and share your results with your healthcare provider to help you have well-informed discussions about your treatment plan.

Common Misconceptions

People living with narcolepsy may feel social rejection, isolation, or shame. EDS can affect memory and concentration, and people living with narcolepsy may be perceived as uninterested or bored. Dropping things because of cataplexy may be perceived as clumsiness.

Your
Narcolepsy Symptoms

Narcolepsy assessment tool thumbnail

Could narcolepsy be interfering with your daily activities or enjoyment of life?

This tool may help you better understand the impact narcolepsy symptoms may be having on your daily life. Take this assessment a few times each year and share your results with your healthcare provider to help you have well-informed discussions about your treatment plan.

The Know Narcolepsy Survey

Of people living with narcolepsy surveyed (n=200):

Know Narcolepsy Survey Workplace Graphic
Not Everyone Knows Narcolepsy

The Know Narcolepsy Survey found that 74% (n=149) of people living with narcolepsy surveyed (n=200) believe the media presents a distorted view of narcolepsy. Some movies and TV shows portray narcolepsy in a humorous way. Of the general public surveyed in the Know Narcolepsy Survey (n=1,203), over two-thirds (n=813) agreed that people do not take narcolepsy seriously.

The Know Narcolepsy Survey

Of people living with narcolepsy surveyed (n=200):

Know Narcolepsy Survey Workplace Graphic

*The Know Narcolepsy Survey was a three-party survey of 1,654 US adults including those with narcolepsy (n=200), the general public (n=1,203), and physicians (n=251) currently in clinical practice who have treated patients with narcolepsy in the last two years. The survey was conducted online in March, April, and August 2018, respectively, by Versta Research on behalf of Harmony Biosciences, LLC. The Narcolepsy Network collaborated on the patient survey.

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Performance of routine tasks without awareness or memory.

Difficulty focusing or concentrating.

Brief loss of muscle tone with retained awareness, often triggered by strong emotions.

Frequent shifts between different states of sleep and wakefulness at night.

The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.

A chemical in the brain that helps maintain wakefulness.

Vivid dream-like experiences that occur while falling asleep.

Dream-like events that occur when falling asleep. Called hypnopompic hallucinations if they occur when waking up.

A chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.

Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”

Restorative sleep state with decreased muscle tone.

Occurs at night and includes dreams; muscles are not active to prevent people from acting out dreams.

Daytime and evening habits to improve sleep.

Brief total loss of voluntary muscle control when falling asleep or while waking up.

People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin.

The cause of type 2 narcolepsy is unknown.