🐶 Viral Video! Did you know Wally the shelter pup living with narcolepsy is actually AWAKE in this video?! He’s not passed out, he’s aware of his surroundings but his muscles are paralyzing on him.
.
💡Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. It affects 1 in 2,000 people. 🐎 Dogs and horses can also get narcolepsy.
.
Understand the symptoms:
⚡️Excessive daytime sleepiness: Periods of extreme sleepiness during the day that feel comparable to how someone without #narcolepsy would feel after staying awake for 48-72 hours.
.
⚡️#Cataplexy (shown in video): Striking, sudden episodes of muscle weakness usually triggered by strong emotions such as laughter, exhilaration, surprise, or anger. The severity may vary from a slackening of the jaw or buckling of the knees to falling down. The duration may be for a few seconds to several minutes and the person (or pup) remains conscious during the episode.
.
⚡️Hypnagogic and hypnopompic hallucinations: Visual, auditory, or tactile hallucinations upon falling asleep or waking up.
.
⚡️#Sleep paralysis: The inability to move for a few seconds or minutes upon falling asleep or waking up.
.
💕 Thank you Humane Society in Austin @austin_humane and @1510foundation for helping Wally receive a diagnosis and treatment!
.
❓Learn more at @project_sleep ! Got questions? Ask below! ⬇️
🎥 Please share to raise #narcolepsy awareness on #worldnarcolepsyday! Here’s the clip of our President & CEO @remrunner sharing her story in a live interview with @dianermacedo of @abcnewslive !
.
✨Huge thanks to Diane and ABC News Live for helping us raise critical awareness so more people find an accurate diagnosis sooner!
🙀Narcolepsy: Will I FALL ASLEEP in this video?! Wait for it…
.
💡#Narcolepsy is a chronic neurological condition of the sleep-wake cycle affecting 🌎 3 million people worldwide, so WHY aren’t you seeing people falling asleep standing (like in 🎬 Deuce Bigalow & Rat Race)?
Narcolepsy’s sleepiness can feel excruciating, but what does it look like. For me:
🔥Internally – my sleepiness aches. My limbs become heavy and pressure pushes on my skull. Over 15 minutes or so, I lose my ability to process thoughts and communicate. Sometimes I do fall asleep. Other times, I snap out of it randomly.
✨Externally – my sleepiness is fairly undetectable. At its worst – friends have said that I seem “subdued,” “quiet,” “annoyed” or “dazed.” So even when I’m experiencing excruciating sleepiness internally – I look “subdued.”
🌀Narcolepsy’s sleepiness can look like:
- Irritability
- Mood instability
- Hyperactivity
- Impulsivity
- Memory issues
- Poor academic functioning
- Social and family issues
❗️To learn more, check out my memoir #WideAwakeandDreaming or visit @project_sleep ! Stay tuned for more videos breaking down other symptoms like cataplexy & scary hallucinations around sleep!
.
💡This matters because with testing & a REAL narcolepsy diagnosis, treatments are available to help improve symptoms!
.
⬇️ Comment below with your thoughts.
💕 Share to help us spread the word!
.
.
.
#worldnarcolepsyday #narcolepsyawareness #sleep #sleepdoctor #tiredAF #sleepiness #sleepingbeauty #invisibleillness #hiddendisability #invisibledisability #worldnarcolepsyday2023 #Endthestigma #breakdownstigma #fightstigma #reallife #waitforit #keepwatching
⚠️ “Can you drive with narcolepsy?”
I get this question a lot, and it’s a complex and important topic to handle with care. Here’s how I answer….
❗️It’s important to know that while I do drive (with caution), experiences vary.
💡It’s also important to know that TREATMENTS exist and can help. I’ve heard of people thinking they could have narcolepsy, but don’t want pursue diagnosis for fear of losing their license. Treatments are not perfect but csn help, along with awareness of your condition.
🚙😵💫Driving drowsy not knowing what is causing your sleepiness (could also be sleep apnea or idiopathic hypersomnia), is dangerous. Seek support, contact @project_sleep ’s Sleep Helpline and consult a sleep specialist.
🔜Stay tuned for an upcoming @project_sleep #narcolepsynerdalert broadcast about #narcolepsy & driving!
🇬🇧London is magical!! I hear it’s not always this sunny ☀️ but I’ll cherish all the sunshine and shadows, blooming flowers, and secret garden-esque walks we got last week!
Thank you @phoehay@melissa_buron@docstilly for such an amazing trip!
✨When you laugh from that deep part of you, when you feel so yourself and so at home 🏠 with people, when you feel your cup filling with joy… that was this trip! 🇬🇧
Thank you Brown @brownuclass2005 🐻 for giving me best friends to walk this journey over the past 25 years together now. We almost got the whole band back together, with 4 out of the 5 of us making it together! @phoehay@docstilly@melissa_buron (💕we missed you so much @rebeccalynn1212 )
🐸🎉 Happiest birthday wishes to my amazing college roomie @phoehay today! I’m sooo glad we got to celebrate together in person. 🥂
👀Hyper narcolepsy’ isn’t real.
⭐️ But narcolepsy is—and it’s far more complex than TV usually gets right.
🧠 Think: severe daytime sleepiness, sudden paralysis with emotions, vivid hallucinations around sleep. See @project_sleep and @hollywdhealth to learn more! We are working together to advance accurate and fascinating stories about sleep disorders on TV.
🎬 So when an amazing series like The Pitt, known for medical accuracy drops a line like this, it’s strange and it misses a huge opportunity.
💡An accurate portrayal of a doctor or patient with #narcolepsy would be innovative. It would show that a series can actually break transcend outdated tropes.
❓Who in TV is finally going to do narcolepsy justice?
#thepitt #disabilityrepresentation #disabilityawareness
⚠️ This Story Might Teach You About Narcolepsy!
✨Thoughtful. Nuanced. Human.
☀️As a person living with narcolepsy, THANK YOU @bytiffanycrum for capturing the reality that narcolepsy isn’t a punchline—it’s a complex, often invisible condition that millions are navigating every day.
💕If you loved Joy and “This Story Might Save Your Life” as much as I did, I hope it opens the door to asking yourself:
✨How’s YOUR sleep? @project_sleep is the non-profit I built to help people facing sleep issues and sleep disorders.
�📖 If you live with #narcolepsy, I can’t wait to hear what you think of this book. I didn’t want to give away any spoilers in this review, there’s sooo much more to discuss! 🤓
Let’s keep turning stories into understanding 💙
#bookstagrammer #thisstorymightsaveyourlife #wideawakeanddreaming
We're excited to announce that Julie Flygare, JD will be presenting at the #BeyondSleepy™ 2026 Conference on the topic of Sleep in Media.
Join us at the Baltimore Marriott Inner Harbor at Camden Yards from June 12-14, 2026, for the Hypersomnia Foundation’s #BeyondSleepy™ 2026 Conference. Virtual attendance is available.
🔗 REGISTER - /registration or click the link in our bio
If you are attending in person and planning to stay at the Baltimore Marriott Inner Harbor at Camden Yards, we have a special rate of $139/night plus taxes. Reserve a room HERE - /beyondsleepybaltimore
Julie Flygare, JD, serves as President & CEO of Project Sleep. Flygare is an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. In March 2022, she delivered the TEDx Talk, “What Can You Learn from a Professional Dreamer?” Recently, the Sleep Research Society awarded Flygare the 2024 Public Service Award for significantly advancing the mission of the SRS through advocacy and public policy efforts.
Other Topics of Discussion at #BeyondSleepy™ 2026 Conference:
🧬 Innovation in Narcolepsy and Idiopathic Hypersomnia Treatment
🤝 Sleep Equity
📱 Sleep and Wearable Technology
👥 Relationships
✌️CBT - Behavioral Sleep Health
😴 🎥 Sleep in Media
😶🌫️ Brain Fog
🥄🥄 Occupational Therapy Tools for Sleepiness
👨👩👦👦 Impact of IH on Family
+ Opportunity for Q&A after presentations, updates on clinical trials, and upcoming events hosted by Hypersomnia Foundation.
✨What odd questions have you received? Share in comments, I’ll address yours in future post!
👀 People are well-intentioned but don’t always know the right questions to ask…
My biggest tips for #narcolepsy convos:
1. No matter what someone asks, you can pivot to whatever you want to share.
2. I suggest responding in just a few sentences. If the person is interested, they will ask more.
3. Ask them about their sleep and wakefulness. Most people love to share about themselves and may not often get a chance to talk about their sleep.
☀️💕 More coming SOON! Follow for more: @remrunner
🐶💕Three years ago today, I brought Scrappy home from @bichonsandbuddies . Thank you for being my napping buddy and sidekick, I’m forever grateful for you, Scrapster.
March: you were magical!
🎾 From winning a national championship alongside the most fierce badass ladies in San Diego, 🎤 to representing @project_sleep and speaking at the Axios House at @sxsw in partnership with @harmony_biosciences team in Austin, TX…
From celebrating my soul sister, @melissa_buron ’s opening of her exhibit “Monet and Venice” at the @deyoungmuseum in San Fran to @jingsta ’s amazing birthday weekend at @the__courts in Borrego Springs…
It was an action packed month, maybe a little too much action, lol, but all so amazing!! + many walks with scrappy and many naps too!
