Runner: Having narcolepsy is harder than a marathon

Story highlights

  • Julie Flygare has narcolepsy with cataplexy, causing chronic sleepiness
  • She challenged herself to run a marathon

(CNN)For years, Julie Flygare kept her condition private. She hadn't liked people's reactions on the occasions when she had opened up and shared her story. People thought it was a joke or not important.

In 2007, Flygare, then a 24-year-old law student, was diagnosed with narcolepsy with cataplexy, a neurological disorder that causes chronic sleepiness and, in her case, symptoms of brief episodes of muscle weakness triggered by strong emotions.
But Flygare turned the situation on its head. The Ivy League grad went on to earn her law degree from Boston College, where she studied health law and health policy.
    Now, Flygare is 33 and lives in Los Angeles, where she works full-time as a marketing manager and heads her nonprofit, Project Sleep, aimed at raising 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 decision Flygare makes: when she eats, when she drives, when she works, when she sleeps. She takes medication twice a night and stimulants during the day. This means, for example, planning meals strategically to maximize her wakefulness for important tasks, like driving, since eating can contribute to her excessive daytime sleepiness. People with narcolepsy often don't sleep through the night.
    But she didn't want the disorder to define her boundaries. So Flygare went after her toughest physical challenge yet: 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.

    What it means to live with narcolepsy

    Narcolepsy affects about one in 2,000 people in the United States, according to the Division of Sleep Medicine at Harvard Medical School. It's rare, but experts say it's probably underdiagnosed.
    "What's generally said, and it's a very hard thing to prove, is that only about half of people with narcolepsy are actually diagnosed as such," said Dr. Thomas Scammell, a professor of neurology at Harvard Medical School and a physician at Beth Israel Deaconess Medical Center in Boston.
    "Part of the challenge is because narcolepsy isn't a common disease and because most doctors get very little training in sleep disorders, our concern is that a lot of times, when people go to their primary care doctor, neither the patient nor the doctor may really have an appreciation of what are the right questions to ask to lead to the diagnosis," Scammell said.
    There are two major types of narcolepsy: narcolepsy with cataplexy and narcolepsy without cataplexy.
    Narcolepsy causes relentless sleepiness. Cataplexy is episodes of muscle paralysis triggered by emotions, like surprise or laughter. Symptoms typically start between the ages of 10 and 20, develop over several months and last a lifetime.
    Cataplexy started when Flygare was 21. She consulted a few doctors about her symptoms, but they didn't know what it was.
    Finally, she saw a sports therapist who asked whether her knees ever buckled. They did.