Cataplexy
10 Things You Didn’t Know About Narcolepsy
In honor of National Sleep Awareness Week, the top 10 things you didn’t know about narcolepsy: 10. It’s not like the moviesRat Race, Deuce Bigalow: Male Gigolo and Moulin Rouge feature comical characters with narcolepsy. Falling asleep mid-sentence may happen in real-life, but it’s not the typical everyday experience. Narcolepsy is more than sleepiness, involving other serious…
Read MoreRaising Narcolepsy Awareness at UCLA Medical School
Last Friday, Jan. 31, I shared my inspirational narcolepsy story at UCLA Medical School. In one hour, we laughed, cried and changed perceptions about narcolepsy in future doctors. The medical students had recently studied narcolepsy in their curriculum – briefly learning the symptoms and watching a few YouTube videos. I was honored to add my patient…
Read MoreBugs, Sex, Lies & Homeless People: My Top Ten Cataplexy Triggers
Cataplexy is a fascinating symptom of narcolepsy – a sudden loss of muscle tone, without loss of consciousness, often triggered by emotions. I experience minor cataplexy daily – knees buckling, jaw slackening, eyes fluttering or hands trembling. With medication, my full-body attacks are once every couple weeks. It’s not always strong or positive emotions that cause my…
Read MoreGuest Post: Dear Terrie
Guest post by Terrie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. ——– Dear Terrie, You are about to go on a journey that will take you to many lows along the way. Your doctor will soon confirm that you have Narcolepsy. You will experience all the symptoms…
Read MoreFDA Narcolepsy Meeting Video – Watch Now!
The Webcast Recordings of FDA’s Narcolepsy Meeting on Sept. 24, 2013 are now available. Watch Here: PART 1 – Opening to Break PART 2 – Break to Closing Get Involved: REM Runner’s Recap and Photos Take the Unite Narcolepsy Survey Submit Comments to the FDA Docket
Read MoreIt’s my birthday and I’ll give away FREE E-BOOKS if I want to…
Six years ago today, I celebrated my 24th birthday on a boat cruise with amazing friends and an over-sized sparkly feathered tiara. We drank, sang, and danced the night away. The next day, I couldn’t walk. I spent the day on the couch, sleeping on and off with spasms of muscle tone – terrified by…
Read MoreRandom Remmie Joins NARCOLEPSY: NOT ALONE Campaign Guest Post by Julie Barfuss
Meet “Random Remmie” – she’s had narcolepsy for as long as she can remember. She hates making her bed, she has a lot of pajamas, slippers, and a blue blanket. She’s really random. CLICK IMAGES TO VIEW SLIDESHOW: About the Artist: Julie Barfuss has lived in Utah her whole life. She doesn’t remember not being…
Read MoreRiding the Waves of Narcolepsy: Julie Flygare Narcolepsy Awareness Video #19
I’m so thrilled to share this video documenting my recent waterskiing adventure. Watch below or on YouTube. Thank you to Alex Withrow for his incredible video production skills and for believing in me. I never would’ve attempted this without his encouragement. Thank you to Brent, Maria and Owen – my boat crew and cheering squad…
Read MoreThe Making of the Narcolepsy Infographic
In just one week, over 20,000 people have viewed the narcolepsy infographic! Here’s how my dream became a reality. What about narcolepsy? After viewing many cool health and disease infographics this past year, I couldn’t help but wonder, “What about narcolepsy?” This made me sad. Narcolepsy deserved an infographic too, but how? I wasn’t a graphic designer…
Read MoreNarcolepsy Documentary in New Zealand
I’m so thrilled to share a recent narcolepsy documentary from New Zealand’s 3rd Degree show! The show follows two “Kiwis” (people from New Zealeand) living with narcolepsy and cataplexy. Watch here. One of my blog followers, Rhonda was featured in this great documentary. Rhonda explains, “I have had narcolepsy since I was a teenager and…
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