NARCOLEPSY: NOT ALONE

Narcolepsy ePatient Medicine X Julie Flygare Video

I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with […]

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Narcolepsy Narcolepsy Narcolepsy Julie Flygare MedX speech

REM Runner’s Note: On Sept. 24, 2015, I had the huge honor of stepping on the MedX main stage at Stanford Medical School to give an ePatient Ignite Talk. This is (more-or-less) what I said:  ************ Diagnosed with narcolepsy at age 24, I was excited to tell my friends and family. Finally! I had legitimate medical terms […]

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REM Runner’s note: Recently, Elaine of Chica Siesta joined the NARCOLEPSY: NOT ALONE campaign. After reading her beautiful blog, I asked her to share in a guest post here. Please enjoy Elaine’s powerful and fresh voice. Read more at chicasiesta.wordpress.com.  Syncopation – by Elaine Golden Recently, my friends and I went swing dancing at a jazz club […]

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homer simpson narcolepsy not alone

When the Simpsons premieres tonight at 8pm ET/PT,  Homer will get “narcolepsy”. I’m thrilled to report that Executive Producer, Al Jean tweeted me: “The episode was modified somewhat after I read the extremely compelling article you wrote. Not sure you will be 100% happy…” Thank you, Al Jean and the Simpsons  for thoughtfully reading and modifying […]

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suffering the silence social media campaign narcolepsy not alone julie flygare patient x

Living in Silence: Eight years ago today, on Sept. 18, 2007, I was diagnosed with narcolepsy with cataplexy, a serious chronic neurological disorder of the sleep/wake cycle. I told friends and family right away. Finally, I had scientific words to describe my mysterious symptoms. But I hated people’s reactions. Some acted as if I’d said […]

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Narcolepsy: Not Alone

As a 29-year-old, female journalist and photographer, I am accustomed to the words people use to define me; “Fearless”, “gutsy”, “courageous” are just a few. But, as a woman living with severe narcolepsy, I often struggle to reconcile these one-dimensional characterizations with my own sense of self. That disconnect was recently underscored when I announced […]

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julie flygare narcolepsy hyersomnia conference 2015

Recently, I traveled to Atlanta to speak at the Hypersomnia Conference 2015. The conference featured a great variety of support groups and fantastic presentations by medical leaders, educational experts, patient advocates and a disabilities attorney. Uniquely, the conference also included hypersomnia, narcolepsy and KLS speakers and attendees, so we could share and learn from each […]

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YOU CAN AND YOU WILL (Marathon Part II)

by julie on June 12, 2015

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As I crossed the start line of the San Diego Rock n Roll Marathon, runners started passing me. I laughed when a pack of Elvis(s) passed me. Typical. “Slow and steady. No one to beat. Nothing to prove,” I told myself. My shirt was drenched with sweat within 3 miles. Soon my hands raisined and […]

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The week of the marathon, I forgot I was running a marathon. “Have you booked your hotel yet?” my co-worker, Betsy asked me on Wednesday. “Uh, no, but I will…” My mind was preoccupied with other efforts, the Jack & Julie Narcolepsy Scholarship and Sleep Walk Dallas. So, I was last minute about everything – […]

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Just 9 days until my marathon and I’m super inspired by Louise, Jacob and their crew of 20 people who sported NARCOLEPSY: NOT ALONE for the Great Ocean Road Marathon in Australia last weekend. 12 runners wore the shirts (including 3 young doctors who have promised to spread the word amongst their peers!), and 8 […]

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