Episode 043 - Narcolepsy

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On this episode of Sh!t We Don’t Talk About, Mia welcomes guest Julie Flygare of Project-Sleep.com to talk about narcolepsy and cataplexy, two conditions we definitely do NOT talk about enough!

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The Highlights

After struggling with fatigue for years, Julie’s struggles in law school finally prompted her to seek help for possible sleep problems.
Beyond issues with fatigue, Julie also experienced repeated buckling of her knees when laughing. Combined with running-related knee injuries, this issue led her to a diagnosis of cataplexy (muscle weakness accompanying emotion) that occurs in people with narcolepsy.
Getting to the point of an accurate diagnosis was not a clear or easy path. Julie was told several times that it was “nothing” or that she would just have to “learn to live with it”.
Narcolepsy is rarely if ever portrayed accurately in popular culture. The disorder is generally used for comedic effect, and it is more than just randomly falling asleep.
Narcolepsy is often confused with symptoms of depression or general sleep problems such as insomnia and sleep apnea. It is often misdescribed, and it is generally misunderstood and under-represented in current western medicine.
In a culture that worships hustle and sees chronic sleep deprivation as a badge of honor, it can be difficult to even see neurological sleep disorders through the “noise”.
People that suspect that they may have more than just “regular” sleep issues should consult medical professionals specializing in sleep. Sleep doctors are a real thing, and they can help.
Having found very little in the way of support for narcolepsy and cataplexy, Julie decided to start her own support group, launching Project Sleep.
Once diagnosed, finding support organizations like Project Sleep can be very helpful!
Project Sleep concerns itself with research and funding issues, education, awareness, and providing a space for sufferers to share their experiences and their stories.
World Narcolepsy Day started in 2019 as a way to attract media attention and to raise awareness of a disorder that effects 3 million people worldwide.
Julie manages her narcolepsy and cataplexy with medication and good lifestyle choices, but she’s a big advocate for “prescribing social support” as part of treatment. Simply having other sufferers to interact with and share with can make a huge difference for someone with an otherwise little-known health problem.

Episode Links

Instagram video by Asia Strek

World Narcolepsy Day

Wide Awake And Dreaming by Julie Flygare

About Julie Flygare

Julie is a leading ambassador for narcolepsy and sleep and a strong advocate for patient-centered research and the importance of social support. She is an accomplished speaker, Stanford Medicine X ePatient Scholar, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. As President & CEO of Project Sleep, a 501(c)(3) non-profit organization, Julie leads the organization’s patient-driven advocacy, awareness, education, empowerment, and scholarship programs. She has lectured at numerous professional meetings and education courses, keynoted conferences in Ireland, Italy, Sweden, Australia, and the United Kingdom. Julie has co-authored papers in peer-reviewed publications and authored a chapter in a narcolepsy clinical textbook.

Organization	Project Sleep
Phone Number	(603) 7596528
E-mail	julie@project-sleep.com
Website	www.project-sleep.com
Facebook Link	https://www.facebook.com/ProjectSleepAwareness
Instagram	https://www.instagram.com/project_sleep/?hl=en
Twitter	https://twitter.com/project_sleep
LinkedIn	https://www.linkedin.com/company/project-sleep/