“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
Living with narcolepsy

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
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Matt How to explain narcolepsy video

How to Answer, “What Is Narcolepsy?”

Leah Social impact of narcolepsy video

How to Manage the Social Impact of Narcolepsy

How to Answer, “What Is Narcolepsy?”

Matt
Living with narcolepsy

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
Living with narcolepsy

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
Living with narcolepsy

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, living with narcolepsy

Your
Narcolepsy Symptoms

How much is narcolepsy interfering with your daily activities or enjoyment of life?

Take this assessment a few times each year before visiting with your healthcare provider. Print or email your results and share them with your healthcare team to help you have informed discussions about your management plan.

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Common Misconceptions

People living with narcolepsy may feel social rejection, isolation, or shame. Excessive daytime sleepiness 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

How much is narcolepsy interfering with your daily activities or enjoyment of life?

Take this assessment a few times each year before visiting with your healthcare provider. Print or email your results and share them with your healthcare team to help you have informed discussions about your management 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=1203), 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-part survey of 1654 US adults including those with narcolepsy (n=200), the general public (n=1203), and physicians (n=251) currently in clinical practice who have treated patients with narcolepsy in the last two years. Surveys of people with narcolepsy and the general public were conducted online in March and April 2018, and physicians were surveyed in August 2018. Versta Research conducted the survey on behalf of Harmony Biosciences. The Narcolepsy Network collaborated on the patient survey.

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Check out videos and stories from others in the narcolepsy community.

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Vivid dream-like experiences that occur while falling asleep or while waking up.

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

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

The cause of type 2 narcolepsy is unknown.

Restorative sleep state with decreased muscle tone.

Daytime and evening habits to improve sleep.

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

A naturally occurring 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.”

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

A naturally occurring chemical in the brain that helps maintain wakefulness.

Vivid dream-like experiences that occur while falling asleep or while waking up.

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

Difficulty focusing or concentrating.

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

Performance of routine tasks without awareness or memory.