What is Narcolepsy?

Narcolepsy: Stereotypes vs. Reality | Rising Voices of Narcolepsy Speaker Series

"Narcolepsy doesn't just look like a guy falling asleep with his head in his cereal bowl."
-Estefy, RVN Speaker

People developing narcolepsy may not recognize that they could have narcolepsy, in part due to portrayals of narcolepsy in movies like Rat Race, Deuce Bigalow Male Gigolo, Moulin Rouge, My Private Idaho, and on TV in shows like The Simpsons and Modern Family. How do these compare to the real symptoms?

Rising Voices of Narcolepsy advocates share basic narcolepsy symptoms and why they are sharing their stories to raise awareness. Common symptoms of narcolepsy include:

- excessive daytime sleepiness
- cataplexy
- hypnagogic and hypnopompic hallucinations
- sleep paralysis
- disrupted nighttime sleep

RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.

ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world. SHARE this video to raise critical awareness!
Video recorded: September 2018

[Kylogie]

This is great. I have some suggestions for future videos. 1. It would be good to point out the two types of Narcolepsy - with and without cataplexy - and be very clear that those without cataplexy do not spontaneously collapse. 2. It should probably be noted that sleep paralysis, and hallucinations can happen to anyone, they are just more common in people with Narcolepsy. 3. Keep up the emphasis on the fact that Narcolepsy does not cause you to just fall asleep with no warning. 4. Point out that the day time sleepiness is not caused by the nighttime disruptions.
Keep up the good work.

[BeatriceFlowers]

I HAVE fallen asleep with my face in food or just sat holding a fork in my mouth, hundreds of times but that’s because there is almost no situation where I haven’t fallen asleep at least once.

[hermanshankovitz]

It caused me to gain about 100 pounds in not even a year. I got big and the kids at my high school started calling me bubble butt but again it's okay for everyone else to do it to me. The minute I stand up for myself all hell breaks loose. They'll make excuses for that also.

[sadsthepotato]

I want to ask my doctor about Narcolepsy. I think I might have it but I'm not sure. I've been unable to control limbs sometimes or feel way to week or numb to move them. And one thing that ik my family is upset with me is the fact that I'm so awake at night, but when its day I'm just tired all the time even when I'm able to get to sleep for an appropriate amount of hours. I've passed out on the couch playing on my phone a few times before or just watching tv. And then I'd wake up refreshed but then get so tired again. Hopefully I can talk to my doctor to see if I can get an experts opinion on what's going on, but when I searched it up on what could probably be the case, it pointed to narcolepsy. Tho I hope I can get to a doctor soon so I know what's actually going on with my body. I've been dealing with this cycle for years, and honestly I think it's just really bad insomnia, and I hope it is. I just don't want to get hurt one day or be a burden to others.