Julie Flygare was diagnosed with narcolepsy with cataplexy ten years ago.
Her condition causes chronic sleepiness and, in her case, symptoms of brief episodes of muscle weakness triggered by strong emotions, CNN reports.
At the age of 33, she is a successful marketing manager, but also heads her own nonprofit, Project Sheep, which aims to raise awareness about sleep health and sleep disorders.
"After all this studying that I did, I kind of felt like we were caught in this catch-22, where we don't like these misperceptions and these jokes that people make about narcolepsy, so then we're not sharing that we have it," Flygare said. "How do we break that cycle?"
Narcolepsy affects every part of Flygare’s life — from when she can eat to when she can drive. She has to take medication twice a night and stimulants during the day.
Recently, she took on her toughest physical challenge, LA’s Griffith Park Trail Marathon.
"I'd say that having narcolepsy on an everyday basis is much harder than running a marathon," Flygare said.
Knowing that she had constraints on her training capability, she took a minimalist approach and if she ever sensed any cataplexy, she would take a day off.
"It's so terrifying to feel paralyzed while you're conscious," Flygare said. "I had so much frustration about that, but then I started to realize that every time I wasn't experiencing that body paralysis was really awesome and that just being able to stand and walk and run was such an amazing thing."
On March 4, she finished the marathon in 5 hours and 48 minutes. "The marathon taught me the power of just showing up," Flygare said.
Narcolepsy affects one in 2,000 people in the United States. However, since the condition is rare, experts believe it is probably under diagnosed.
[H/T Twitter / @CNNI]