Posts Tagged ‘Narcolepsy Awareness’
Sleep’s Choice: Living with Narcolepsy’s Excessive Daytime Sleepiness
Every day, at least once, but usually twice, my head gets heavy, as if a weight sits on my skull, and I know, right then, that sleep is coming. If I don’t put my head down immediately, the heaviness only gets heavier. My joints begin to ache and a wave of nausea comes over me.…
Read MoreJulie Flygare Interviewed About Narcolepsy Advocacy For Siren Interactive Blog
Last week, Siren Interactive invited a few rare disease patient leaders to attend the Rare Disease and Orphan Drug Leadership Congress in Philadelphia. Siren facilitated conversations around the topic of how biopharmaceutical companies can and should engage with patients. In this great blog post, Siren features videos of our experiences and our paths to becoming…
Read MoreJulie Flygare Writes Cover Narcolepsy Story for Caring Voice Coalition’ Community Magazine
The Summer 2012 edition of Community Magazine is out and hotter than ever! I really enjoyed writing the cover story and working with Caring Voice Coalition’s team – they are passionate about patients! Check out my feature narcolepsy article, “In Sickness and In Health” pg. 16-19: [issuu width=420 height=272 backgroundColor=%23222222 documentId=120627200108-e7727450584c4c56af6093c6d21d4463 name=cvc_summer2012 username=rocketpop tag=cvc unit=px v=2]…
Read MoreNice News Segment on Narcolepsy with Cataplexy
This segment features a lovely young woman, Kay Underwood, living with narcolepsy and cataplexy. GMTV accurately and effectively highlighted narcolepsy with cataplexy. Hip hip hurray! This video shows Kay collapsing while laughing – but she is not falling over asleep – she’s falling over with the paralysis of dream sleep while awake. Why is Kay Underwood collapsing when she…
Read MoreAWAKEN Survey Finds America’s Eyes Remain Shut to Narcolepsy
I’m pleased to share groundbreaking results of “AWAKEN,” a survey finding that only 50 Percent of Americans understand significant health impact of narcolepsy, and that many physicians are not comfortable diagnosing narcolepsy. Despite the serious nature of narcolepsy, Americans also misperceive its severity compared to other diseases of similar health concern or prevalence. The results were…
Read More“The Moment I Knew I Needed More Sleep…” In Response to Arianna Huffington’s Post
Arianna Huffington is my hero. In a recent post, she shared the story of the moment she realized she needed more sleep and asked, “What was the moment you knew you needed to get more sleep? I want to hear your story.” Here’s mine: “The moment I knew I needed more sleep was when I woke up…
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