Communicating Narcolepsy
8 Years Since Narcolepsy Diagnosis: No Longer “Suffering the Silence”
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…
Read MoreNarcolepsy Presentations at UCLA Med School 2015 – “A learning experience for both medical students and seasoned physicians.”
On Sept. 1 – 3, I had the extraordinary opportunity to speak at UCLA Medical school three nights in a row, sharing my inspiring narcolepsy journey with 120 first-year medical students and a dozen faculty members. The first-year students were just days into their medical education – energetic and eager to learn! I spoke as part of the students’ required…
Read MoreLiving Bravely With Chronic Illness – Guest Post by Katie G. Nelson
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…
Read MoreMy First Standing Ovation – Speaking at the Hypersomnia 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…
Read MoreWorking with Narcolepsy: Part III – When Caring Comes Naturally
After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room.…
Read MoreWorking with Narcolepsy Part II: Hunting for a Nap Room
In December 2014, our office moved from Downtown Los Angeles to Irwindale, CA. My commute went from 7 miles to 25 miles. At the same time, our office environment went from private offices to cubicles. To be fair – I was well informed about this before I signed up for the job. (Read Part I…
Read MoreWorking with Narcolepsy: Part I – I Fought the Nap and the Nap Won.
On Friday, I was so surprised to be awarded a Values In Action (VIA) award for “Excellence” at work! As I approached the stage, the presenter read the comments from my nomination: Julie is always excited to take on any new task. She approaches her work with enthusiasm, regardless of how big or small the assignment is.…
Read MoreMeet Owen, 11 Year Old Boy Living with Narcolepsy
Recently, I received a video from a mother of a young boy with narcolepsy. Warning: I cannot watch this video without crying. Brooke describes: “My 11-year-old son, Owen, was diagnosed with narcolepsy last spring. It was and is scary, and there just isn’t a lot of information out there, especially positive information! So you have…
Read MoreProject Sleep Awards 10 Scholarships to Students with Narcolepsy Entering College
While crossing the finish line of the San Diego Rock n Roll Marathon was an awesome moment, my biggest prize came yesterday when Project Sleep gave out TEN scholarships to students with narcolepsy through the Jack & Julie Narcolepsy Scholarship program. Meet the 2015 Jack & Julie Narcolepsy Scholarship Recipients: View Scholarship Awards Announcement View/Download…
Read MoreUpdate: The Simpsons Executive Producer Responds
Over the weekend, the Executive Producer of The Simpsons, Al Jean, corresponded briefly regarding the Homer Simpson narcolepsy news via Twitter. First, he tweeted “.@thesimpsons Extremely interesting article about the true dangers of narcolepsy” to share the NY Post article on my experience with narcolepsy (re-published from Women’s Health Magazine). View the tweet here and retweet! I responded,…
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