033: Narcolepsy: the social experience – Julie Flygare


Narcolepsy is a widely misunderstood sleep disorder which affects around 3 million people worldwide. Lack of awareness, and misrepresentation in the media has led many people to struggle not just with managing their condition, but also coping with the social stigmas and prevalent attitudes in society towards narcolepsy and sleep disorders in general.

In today’s episode we talk to Julie Flygare, lawyer, advocate, award-winning author and CEO of Project Sleep, about the social experience of living with narcolepsy.

 

This Episode’s Guest

julie flygare narcolepsy social experience

Julie Flygare, JD is the founder of Project Sleep, a non-profit raising awareness about sleep health and sleep disorders. Julie is a leading narcolepsy spokesperson and award-winning author, diagnosed with narcolepsy with cataplexy in 2007. She received her B.A. from Brown University in 2005 & her J.D. from Boston College Law School in 2009. In 2013, “Wide Awake and Dreaming” won the First Prize Biography/Autobiography Award at the San Francisco Book Festival.

Upon recognizing that many doctors were unfamiliar with narcolepsy, Julie collaborated with Harvard Medical School researchers in 2009 to establish a 5-hour educational program based on her story now taught to all Harvard Medical School students.

More Resources

Project Sleep: https://project-sleep.com/

Twitter: https://twitter.com/project_sleep

Instagram: https://www.instagram.com/project_sleep/

Youtube: https://www.youtube.com/user/projectsleepvideos/videos

Julie’s Website: http://julieflygare.com/

Julie @LinkedIn: https://www.linkedin.com/in/julieflygare/

The Book: Wide Awake & Dreaming: A Memoir of Narcolepsy

Sleep Junkies Interview: Rising to the challenge: narcolepsy advocate Julie Flygare

Episode Homepage: https://sleepjunkies.com/social-experience-narcolepsy

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  1. I have nothing but respect for Julie, her Narcolepsy Journey, her achievements and all she has done for the Narcoleptics of the world. However, just as she said she couldn’t compare her level of sleepiness to that of the first doctor she saw at Boston College every case of Narcolepsy is different. Unfortunately, it still takes 6 to 10 years on average to get a correct diagnosis. These new drugs that are coming out are not available as Insurance Companies won’t cover them or people don’t have Insurance. Even with Great Britain’s NHS drugs and treatment are not obtainable. I’m a member of a Facebook Group that currently has over 20,000 members from across the Globe. These members are Narcoleptics, a spouse, parent etc. of a person with Narcolepsy, someone who thinks they may have Narcolepsy…you get the idea. We are all still very isolated, shunned by our families being called lazy or worthless, some have lost jobs or can’t keep a job, some are medicated some are not, some can’t find a medicinal regiment that works some can and some have comorbidities involving a wide range of medical conditions which is a whole other story. I was in my late 30s when I was diagnosed after years of going to doctor after doctor. The field of sleep medicine and sleep disorder research has come a long way but the population that has these sleep disorders are still very much alone in the dark.

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