In November 2015, PatientWorthy sounded off on an article that I really liked called: “A Day in the Life of a Narcoleptic” by Steven Jackson.
I applauded (and still do) Steven’s approach to bringing narcolepsy to light. He captured my attention to a point where I felt compelled to learn MORE about Julie Flygare and narcolepsy. And I’m so glad I did cuz Julie is one rootin, tootin FAB-U-LOUS narcolepsy advocate!
Julie, a former law school student turned author, has kind of a rags to riches story that I think everyone in the narcolepsy community should take notice of!
Okay, so her story isn’t QUITE “rags to riches” because it’s not about her making money (though if she did, well, good for HER)! Julie’s story is more about her transformation from “victim” to empowered “advocate.”
Julie has narcolepsy with cataplexy and she’s lost sooooooooo much in her young life, having been victimized by narcolepsy when she was in law school.
She’d been plagued by fatigue, but figured that was expected as a student. Everything changed when one bright day she set out to drive to school only to wake up hours later in a parking lot, sprawled out in her car and not knowing how she got there. It was bizarre!
That wasn’t the only weird thing that’s happened; Julie has also experienced vivid hallucinations (hypnagogic hallucinations) that have nearly scared her to death!
She was wide awake one night, and saw (at least in her mind) a burglar standing in her doorway with his hands outstretched to grab her face! After she worked through her panic, she suspected something wasn’t right and began looking under the bed, her closet, and the rest of her flat, and determined she was hallucinating as a result of her narcolepsy.
What’s so amazing is that Julie is so willing to talk about her experiences. I mean, how many people do YOU know who are willing to reveal some of the most intimate details of their lives regardless of what other people might think?
Well, I tell you what, Julie hasn’t been sitting on the sidelines of life. In fact, she’s igniting hope and inspiration into the narcolepsy community with fury!
She’s written and published a book, Wide Awake and Dreaming.
She blogs.
She’s a yogi.
She’s a runner!
And…she’s my new hero! You go girl!
Thank you, Julie, for being so courageous and for fighting the stigma of narcolepsy.
And BTW, I agree with you 110% – doctors should also prescribe “support” instead of just medication to manage this autoimmune disease that affects nearly 200,000 Americans and 3,000,000 people worldwide.
Rock on, Julie, and keep up the good work!
If you think that you or your loved one might have a sleep disorder, visit:
And please, make an appointment with a sleep specialist, because there is help—and hope. You, too, can fight back to become your own health advocate!
