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Know Our Stories: A Narcolepsy Blog

Read stories written by members of the narcolepsy community. In their own words, they share their journeys with the disorder, the challenges they face in everyday life, and the importance of being a self-advocate.

Andre Being Your Own Advocate Blog Image

Andre

Being Your Own Advocate: Living With Narcolepsy

As a person living with narcolepsy, what does it mean to be your own advocate? For me, it began even before I got my narcolepsy diagnosis...

Read more »
Scott Narcolepsy with Cataplexy Blog Image

Scott

Narcolepsy With Cataplexy: Live Each Day to the Fullest

For those of us living with narcolepsy with cataplexy, at some point someone we care about may refer to us as lazy or even worthless...

Read more »
Scott Living with Narcolepsy with Cataplexy Blog Image

Scott

Living With Narcolepsy With Cataplexy: Felt Like A Short Circuit Within My Brain

Just prior to narcolepsy entering my life, I was on the highway to a bright and prosperous future. I was an excellent student, athletic, and driven to succeed. Then narcolepsy merged into my lane...

Read more »
Gina Living With Narcolepsy Blog Image

Gina

Living With Narcolepsy Day to Day: Winter Mornings

I’ve always wanted to be one of those moms, the kind that gets up at 5:30 in the morning. Maybe drinks a cup of coffee or goes for a walk, all before the kids wake up. Living with narcolepsy and excessive daytime sleepiness (EDS) isn’t always like that...

Read more »
Andre Living With Narcolepsy Blog Image

Andre

My Days Living With Narcolepsy: Self-Care Helps

Imagine the most exhausting morning you have ever experienced. Remember how heavy every muscle in your body felt…

Read more »
Matt Holiday Courage Blog Image

Matt

Navigating the Holidays With Narcolepsy: From Fear to Courage

For many, holidays hold a few constants: family and gatherings. Both the presence and absence of family can elicit strong feelings…

Read more »
Matt Holiday Toolbox Blog Image

Matt

Navigating the Holidays With Narcolepsy: Building A Narcolepsy Toolbox

For years, the lead-up to holidays was full of anxiety and fear—knowing that disruptions were coming and feeling powerless…

Read more »
Gina Diagnosis Blog Image

Gina

The Search for an Answer: My Diagnosis of Narcolepsy with Cataplexy

Before I was diagnosed with narcolepsy with cataplexy, I was a full-time working mom and wife. Live was chaotic, stressful, and at times unmanageable…

Read more »
Andre Diagnosis Blog Image

Andre

My Narcolepsy Diagnosis: It Didn’t Change Everything

I love my family, and I love to cook. I worked hard as a chef. When I was home, I enjoyed making dinner for the kids and reading them stories. But I started to notice that I would nod off while sharing a book or playing games with my family…

Read more »
Matt 2022 Sleep Awareness Week Blog Image

Matt

2022 Sleep Awareness Week: Raising Awareness Helps Everyone

Living with narcolepsy is not a punchline. We wake up every day feeling like we haven't slept for 48 hours, with periods of sleepiness where it feels like 72 hours without sleep…

Read more »
Leah Living With Narcolepsy Honesty Blog Image

Leah

Living With Narcolepsy: Honesty Just Might Be the Best Policy

I teach eighth grade. For a person living with narcolepsy, you might think that poses an insurmountable challenge…

Read more »
Emily 2022 Sleep Awareness Week Blog Image

Emily

2022 Sleep Awareness Week: Together Our Voices Can Help

Everyone knows what it feels like to be tired, but narcolepsy is so much more than that. The symptoms can mirror so many other disorders…

Read more »
Andre Working With Narcolepsy Blog Image

Andre

Working With Narcolepsy: Tips and Habits to Help Throughout the Day

As a chef, my work environment often alternated between the frantic hustle and bustle of a large kitchen and the silent solitude of preparing larger family-style dishes as a private caterer. As a person living with narcolepsy, either scenario could pose challenges…

Read more »
Andre Being Your Own Advocate Blog Image

Andre

Being Your Own Advocate: Living With Narcolepsy

As a person living with narcolepsy, what does it mean to be your own advocate? For me, it began even before I got my narcolepsy diagnosis...


Read more »
Scott Narcolepsy with Cataplexy Blog Image

Scott

Narcolepsy With Cataplexy: Live Each Day to the Fullest

For those of us living with narcolepsy with cataplexy, at some point someone we care about may refer to us as lazy or even worthless...

Read more »
Scott Living with Narcolepsy with Cataplexy Blog Image

Scott

Living With Narcolepsy With Cataplexy: Felt Like A Short Circuit Within My Brain

Just prior to narcolepsy entering my life, I was on the highway to a bright and prosperous future. I was an excellent student, athletic, and driven to succeed. Then narcolepsy merged into my lane...

Read more »
Gina Living With Narcolepsy Blog Image

Gina

Living With Narcolepsy Day to Day: Winter Mornings

I’ve always wanted to be one of those moms, the kind that gets up at 5:30 in the morning. Maybe drinks a cup of coffee or goes for a walk, all before the kids wake up. Living with narcolepsy and excessive daytime sleepiness (EDS) isn’t always like that...

Read more »
Andre Living With Narcolepsy Blog Image

Andre

My Days Living With Narcolepsy: Self-Care Helps

Imagine the most exhausting morning you have ever experienced. Remember how heavy every muscle in your body felt…

Read more »
Matt Holiday Courage Blog Image

Matt

Navigating the Holidays With Narcolepsy: From Fear to Courage

For many, holidays hold a few constants: family and gatherings. Both the presence and absence of family can elicit strong feelings…

Read more »
Matt Holiday Toolbox Blog Image

Matt

Navigating the Holidays With Narcolepsy: Building A Narcolepsy Toolbox

For years, the lead-up to holidays was full of anxiety and fear—knowing that disruptions were coming and feeling powerless…

Read more »
Gina Diagnosis Blog Image

Gina

The Search for an Answer: My Diagnosis of Narcolepsy with Cataplexy

Before I was diagnosed with narcolepsy with cataplexy, I was a full-time working mom and wife. Live was chaotic, stressful, and at times unmanageable…

Read more »
Andre Diagnosis Blog Image

Andre

My Narcolepsy Diagnosis: It Didn’t Change Everything

I love my family, and I love to cook. I worked hard as a chef. When I was home, I enjoyed making dinner for the kids and reading them stories. But I started to notice that I would nod off while sharing a book or playing games with my family…

Read more »
Matt 2022 Sleep Awareness Week Blog Image

Matt

2022 Sleep Awareness Week: Raising Awareness Helps Everyone

Living with narcolepsy is not a punchline. We wake up every day feeling like we haven't slept for 48 hours, with periods of sleepiness where it feels like 72 hours without sleep…

Read more »
Andre Diagnosis Blog Image

Leah

Living With Narcolepsy: Honesty Just Might Be the Best Policy

I teach eighth grade. For a person living with narcolepsy, you might think that poses an insurmountable challenge…

Read more »
Andre Diagnosis Blog Image

Emily

2022 Sleep Awareness Week: Together Our Voices Can Help

Everyone knows what it feels like to be tired, but narcolepsy is so much more than that. The symptoms can mirror so many other disorders…

Read more »
Andre Working With Narcolepsy Blog Image

Andre

Working With Narcolepsy: Tips and Habits to Help Throughout the Day

As a chef, my work environment often alternated between the frantic hustle and bustle of a large kitchen and the silent solitude of preparing larger family-style dishes as a private caterer. As a person living with narcolepsy, either scenario could pose challenges…

Read more »
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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 (also known as orexin).

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.

Also known as orexin, hypocretin is 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.