From the Founder’s Desk: Why Project Sleep?

At age 23, I gave up on myself.

project sleep founder julie flygareIt was a Friday, the day after Thanksgiving. As an ambitious first-year law student, I returned to law school to study. No leftover turkey sandwiches. Final exams were approaching.

Yet, within a few hours of studying at Boston College’s law library, I peeled my right cheek from my textbook, only to find drool on the case I was reading.

Disgusted, I wiped my spit off the page. In three hours, I’d read three pages. I wondered, What the hell is wrong with me?

As a student at Brown University, I’d excelled as a Division I athlete and an art history major. Hard work was my middle name. Law school was supposed to be the same. I felt like I cared, but  I’d lost my will power and drive to succeed and so, I’d lost myself.

About six months later, I woke up one morning in the law school parking lot unsure how I’d got there. I remembered leaving home, but couldn’t recall arriving at school. I’d gotten 10 hours of sleep the night before. For the first time, I thought:

Maybe I have a sleep problem.

Soon thereafter, I visited a primary care doctor and announced, “I think I have a sleep disorder.”

“Everyone gets tired,” the doctor responded. “Even I pull over for coffee when driving sometimes.”

She suggested thyroid issues, depression and anemia.

Within a few months, at age 24, I was diagnosed with “narcolepsy with cataplexy”, a serious neurological disorder of the sleep/wake cycle. As I slowly untangled the webs of my past, I was horrified to realize how far I’d fallen to sleep.

Sleepiness crept in during college but I was good at making excuses.  I stayed up too late, I got up too early, the classroom was hot, the professor was boring, I hadn’t had enough coffee, I’d had too much caffeine, all college students are sleep-deprived…

In addition, every signal from society led me to believe my serious sleep problem wasn’t serious and wasn’t a sleep problem. I self-medicated. I repressed scary incidents.

I slept through critical life moments in my budding young adult life.

And I’m not alone. An estimated 50 to 70 million Americans chronically suffer from sleep and circadian disorders. Yet, many are undiagnosed or misdiagnosed with other disorders. Teachers, employers and parents may mistake symptoms for laziness, depression, attention issues, or the result of late-night partying [1].

Primary care doctors may miss obvious indicators as well. In 1993, only 63 percent of medical curricula included sleep medicine [2], with an average of 2.1 hours of class time devoted to all sleep disorders [3].

Sadly, there’s no indication of improvements [4]. A 2007 review of medical specialty textbooks found that sleep and sleep disorders information made up only 2 percent of all content [5].

Why Project Sleep?

I founded Project Sleep so that no one battling sleepiness will give up on themselves. I challenge the notion that “pulling an all-nighter” is a badge of honor. I envision a world where sleep is not a footnote on life, but a gateway to truly understanding our bodies and minds.

Project Sleep is not your average sleep health and sleep disorders awareness organization. Our campaigns will not be passive or snoozy. We will take risks and push for change. Our mission is urgent and our passion is fierce.

Right now, Project Sleep’s key programs include the SLEEP WALK signature event series, the Narcolepsy: Not Alone campaign and the Jack & Julie Narcolepsy Scholarship. We also have fun and innovative educational tools in development that we can’t wait to share!

Please consider making a donation or signing up to volunteer on this amazing Dream Team (email: volunteer@project-sleep.com). Join us in making sleep joyful, accessible and maybe even a little “cool”. Thank you for your support.

Sending wakefulness your way,

photo (6)

Julie Flygare, J.D.
Founder & President, Project Sleep

REFERENCES:

[1] Institute of Medicine (US) Committee on Sleep Medicine and Research; Colten HR, Altevogt BM, editors. Sleep Disorders and Sleep Deprivation: An Unmet Public Health Problem. Washington (DC): National Academies Press (US); 2006. Available from: http://www.ncbi.nlm.nih.gov/books/NBK19960/

[2] Rosen RC, Rosenkind M, Rosevar C, Cole WE, Dement WC. Physician education in sleep and sleep disorders: a national survey of U.S. medical schools. Sleep. 1993;16(3):249-254. 

[3]Rosen R, Mahowald M, Chesson A, et al. The Taskforce 2000 survey on medical education in sleep and sleep disorders. Sleep. 1998;21(3):235-254.

[4] Harding SM, Berner ES. Developing an action plan for integrating sleep topics into the medical school curriculum. Sleep Breath. 2002;6(4):155-160.

[5] Teodorescu MC, Avidan AY, Teodorescu M, et al. Sleep medicine content of major medical textbooks continues to be underrepresented. Sleep Med. 2007;8(3):271-276.

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8 Comments. Leave new

  • Maria Santander
    October 2, 2014 6:53 pm

    You are Great! Thanks

    Reply
  • Julie, the strength and courage you show inspires me every day. Thank you for making this happen. <3

    Reply
    • Julie Flygare
      October 4, 2014 5:07 pm

      Thank you for your support, Deb! Thank you for wearing your bracelet and raising awareness. Your friend, Julie

      Reply
  • Julie,

    Thank you for your commitment to advancing the patient’s interest in the field of sleep medicine. You are a model of persistence. I am pleased to call you a friend and a colleague.

    Ed

    Reply
    • Julie Flygare
      October 4, 2014 5:07 pm

      Thank you so much my dear friend, Ed! You are an incredible co-advocate too and I’ve enjoyed working with you lots. Here’s to a brighter future for sleep! 🙂

      Reply
  • I just want to thank you from the bottom of my heart Julie for your story your book wide awake sleeping (sorry if the name is wrong I have memory issues)!!!!!! It has helped me understand my niece who I consider a daughter a friend and the best pal a girl can have. You once put her poem on your website (Shelby Stein) and I’m sure u have gotten thousands of pics for not alone but I’m the crazy one with the pug lol. I. Can’t imagine being so forthcoming w my own story but thank you from the bottom if my heart that you have been. Ur book helped me understand Shelby’s narcolepsy w cataplexsy so much… w/0 it I would still b at a loss of trying to understand it all. I’m thrilled to report she started her first ur of college this year! I’m so proud of her and yourself. Thank u for helping countless Ppl to understand more what their loved ones are really dealing with!!! As long as their Ppl like yourself..I believe there is hope! Ur an amazing young woman and I applaud ur tenasatey to put itself out there and make a difference. Dont ever doubt what ur striving for because u can never know how much u helped just my family….and u r an inspiration to us all. Thx for ur time.!!!”

    Reply
    • Julie Flygare
      October 4, 2014 5:05 pm

      Thank you, Amanda! Of course I remember your photo with the pug. You were one of the very first in the campaign and every picture is so very dear to my heart. Thank you for supporting Shelby’s experience with narcolepsy and cataplexy – she is an extraordinary young lady and I’m a big fan of her and your entire family!

      I’m so very glad that my book helped make narcolepsy understandable. This is exactly why I wrote it so this comment is a huge gift. Thank you for supporting my efforts. Thanks again! -Julie

      Reply

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