WATCH NOW: MedX 2015 Ignite! Talk by Narcolepsy Advocate, Julie Flygare

by julie on October 25, 2015

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 narcolepsy can hurt more than the terrifying symptoms of the disorder. Lastly, I encourage doctors to prescribe social support for patients facing chronic invisible conditions like narcolepsy.

Thank you so much to Dr. Chu and the entire MedX team for this invaluable opportunity. Special thanks to Theo and Paul for creating the best intro video ever!

Medicine X is an academic conference to bring together ALL stakeholders (patients, providers, technologists and researchers) to innovate healthcare and medicine.  The “X” is meant to encourage thinking beyond numbers and trends—it represents the infinite possibilities for technologies to improve health.

More about MedX:

Share this video linkhttps://youtu.be/MXTd8xd_f8s

{ 3 comments… read them below or add one }

laura j. evert October 25, 2015 at 7:38 pm

wow, wow, wow, julie! brought tears to my eyes in how familiar your words are to myself + other people with narcolepsy i have met throughout the years. we have been discussing this lately in our local support group… how beneficial it would be to have a social worker +/or psychologist assigned to us at diagnosis to help in successfully navigating life with a chronic illness. meeta goswami, phd has known this all along (www.narcolepsyinstitute.org). with your help, i do hope more medical professionals take notice! and, as always, thank you for speaking out!

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Jeremy Stenmark November 4, 2015 at 3:51 am

Isn’t it frustrating that 99% of the time, narcolepsy is never included in the conversations as a sleep disorder? That was probably a run on sentence!
I began feeling symptoms around twelve years of age. Known to my grandmother as the sleepiest kid she knew. Any chance I had I was asleep. I stayed at her house a lot during summers.
Finally diagnosed at eighteen after getting a full time job with health insurance. I’m thirty seven now. It has been a struggle as you know. MANY times being called lazy. Which hurt, but I wasn’t sure how to handle it.
I don’t research narcolepsy at all, but I did tonight and came across your blog post website thingy. Mostly because not much has changed, and I have a pretty good handle on it.
I am medicated, and I have a class a cdl ( I drive trucks ). I have been on provigil daily for eighteen years now. 200mg. I did a sleep study before getting on provigil and I was told I fall into a deep sleep in under one minute. That’s deep REM.
I also did a test with the meds. A latency test and failed each one. While on the meds!
Not sure why tonight I feel the need to off load this info to you. It feels long winded. Maybe it’s because my entire family is in bed at 10:30 and I’m up alone doing chores.
I find that less sleep is better. That has to be a narcolepsy trick!
If you need an eastcoast, mid Atlantic spokesperson to help spread the word, I can try. Not too sure I can do more than you have done to date.
I guess I reached out to you because I must feel like I need some purpose in my life and narcolepsy is what has controlled my life for a long time. It’s what I know. And my life isn’t that bad. I just realized how two sentences ago sounded.

Thanks for reading and allowing me to randomly tell a semi stranger something.
Laters
Jer

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Susan November 11, 2015 at 4:15 pm

Wonderful speech!!! Really made me feel like I understood the illness better. Thank you.

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