Posts Tagged ‘Cataplexy’
Viral Narcolepsy with Cataplexy Video
A video of a young woman with narcolepsy and cataplexy has gone viral. Watch below or on YouTube. This is a powerful video and I am grateful to Sarah Elizabeth for bravely sharing her experience! Sarah Elizabeth is primarily experiencing a narcolepsy symptom called cataplexy here. Cataplexy is a sudden loss of muscle tone, resulting in…
Read More“What is it like to have Narcolepsy?” Communication Tips
Narcolepsy is a neurological disorder of the sleep/wake cycle affecting 1 in every 2,000 people. As a person with narcolepsy, it can be overwhelming to explain the symptoms and affects on life. Typical Questions about Narcolepsy and Simple Answers: Provided by Julie Flygare’s Narcolepsy Mobile App – FREE download today! Q: What is narcolepsy?A: Narcolepsy is a neurological…
Read More10 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 MoreHarvard Medical School’s New Narcolepsy Website
I’m so thrilled to share Harvard Medical School’s new Narcolepsy Website – a fantastic user-friendly resource for patients and supporters alike. There are videos, PDFs and basic information about narcolepsy symptoms, diagnosis and treatment along with suggestions for living well with narcolepsy – including tips for daily life, school, work and safety. I had the…
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 MoreNarcolepsy Lunch Break Webinar
Join me this Wednesday, Jan. 15 at 1:30 p.m. ET for a very special free online event – I will be hosting a Lunch Break Educational Webinar with the American Sleep and Breathing Academy. Register here. When: Wednesday, January 15, 2014 from 1:30 p.m. to 2:30 p.m. ET Debunking the Narcolepsy MythA Presentation by: Julie Flygare, JD…
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 MorePraise for “Wide Awake and Dreaming: A Memoir of Narcolepsy”
So excited to share my very first book review here! Written by the amazing blogger Amanda of “Small Steps: A teenager’s look at living with multiple chronic illnesses including an undiagnosed condition, narcolepsy, cataplexy and gluten and lactose intolerance.” Thank you so much, Amanda! What the experts are saying about my book: “Julie’s memoir describes with eloquence…
Read MoreNarcolepsy Awareness Video 5: Communicating about Cataplexy
Here’s my latest awareness video offering tips on communicating about cataplexy. Make sure to view in 1080p HD. Watch on YouTube. Enjoy! Thank you to Alex Withrow for his expert video production! Thanks for watching and check back soon for more videos. Watch AllWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video…
Read MoreDon’t Mess With My Sleep: Makenna’s Walk for Narcolepsy Research
At age five, Makenna was a healthy bright child in Kindergarten, with a great sense of humor and a charming magnetic personality. Under the Weather:In February 2011, Makenna came down with pneumonia. She was very sick and admitted to the Children’s Hospital for IV Antibiotics. She recovered from the infection, but never got her strength…
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