CNN Article on My Marathon with Narcolepsy

by julie on April 27, 2017

I’m thrilled to share CNN Health’s feature article Runner: Having narcolepsy is harder than a marathon. This Sleep Awareness Week, please share with your friends and family to raise critical narcolepsy awareness.

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Working with CNN on this piece was particularly meaningful. I first spoke with the reporter, Maria, in January two months before the race after she’d read online about my quest to take on Griffith Park Trail Marathon. On our first call, I could tell Maria was really understanding about the invisible and complex condition. At the end of a wonderful long discussion, she said, “Well, let me know how the marathon goes!”

No pressure or anything… If I wasn’t nervous enough about this grueling race, a major media opportunity now hung in the balance! 😉

As my training continued, I stayed in touch with Maria and after completing the Griffith Park Trail Marathon on March 4, one of the best emails I got to write afterward was to Maria to say “I did it!!” Check out my video and read marathon re-cap!

CNN saved the story to run this week in conjunction with the National Sleep Foundation’s new Sleep Awareness Week this April 23 – 29, 2017. While Project Sleep celebrated early with Sleep in 2017 on March 10-12 at the start of daylight savings time, we now have another opportunity to raise awareness.

Please share this CNN article with friends and family today to raise critical awareness of narcolepsy. Thank you for your support!

{ 1 comment… read it below or add one }

LJ January 21, 2018 at 11:02 pm

Dear Julie,
I really enjoy your website and blog. I was diagnosed with narcolepsy in 2005, but had onset of my symptoms a few months after I had a major kidney infection in 1997 (I was 17). It was no surprise to me when the research began to indicate it was an autoimmune condition!
I could chat all day about how enlightening your blog is and how many times in reading your posts I’m struck with the “oh, I’m not crazy!” Feeling! However, I wanted to ask you specifically about your experiences as a narcoleptic distance athlete. I do half-Ironman distance triathlons and since all of the few narcoleptics I’ve met are obese, I’ve been hoping to connect with another “recreational athlete” (i.e. a finish – not a rank – is a great personal best! Lol!). Specifically, I find that any training injuries I get (usually soft tissue tears and sprains) never heal properly, no matter how much physio and rehab I do. I was wondering if it was related to the fact that we (meaning narcoleptics) don’t really go into (or at least don’t stay in) REM, which of course is where most healing of injuries take place. I tried to mention this to my neurologist, but he didn’t really seem interested. Then again, when I ask him how many athletic patients he had, he said he didn’t have another patients who were fit. Also, have you noticed abrupt weight gain after you finish a race and taper off the training for a bit? I’m trying to get more information on the link between narcolepsy, lack of orexin, and inability to develop brown fat. Any thoughts or research that you’re aware of?
I’d love to hear from a fellow athlete!
Thanks again for your brilliant writing and advocacy!
Cheers,
LJ (Laura-Jane) from Canada!

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