This Amazing Woman Is The New Face Of Narcolepsy

When Julie Flygare was diagnosed with narcolepsy eight years ago, she had no idea what would transpire in her life as a result.

She realized that very few people understood narcolepsy, so she was reluctant to talk about it to friends and acquaintances. She would listen as they expressed their misinformed opinions and not reply, because she didn’t want to draw attention to her personal struggle.

#10 Narcolepsy is more than sleepiness and it's not a joke
Unfortunately, some people are a little slow on the narcolepsy uptake. Source:

They had no idea that narcolepsy is a chronic brain disorder that involves a disturbance to the body’s sleep-wake cycle and causes extreme daytime sleepiness.

As happy as she was to finally have a name for her symptoms, it became frustrating because some people didn’t believe she was struggling.

Others actually laughed at her when she told them she had narcolepsy.

The result was she became increasingly more isolated, but at the same time, a bubbling  anger was surfacing.

angel wings los angeles colette miller global wings project narcolepsy advocate julie flygare narcolepsy not alone campaign portrait
Never one to stand back, Julie decided to speak up about narcolepsy. And boy did she ever! Source:

Flygare decided it was time to speak up. She founded Project Sleep, wrote and published a memoir of her journey with narcolepsy, co-founded a scholarship for students with narcolepsy, and created Narcolepsy: Not Alone–an international awareness campaign.

She believes, in hindsight, that she has accomplished more because of her narcolepsy than she might have had she not had the challenges of this “invisible” disease.

To read Flygare’s blog, visit online.

In what way do you speak out about narcolepsy? Share your thoughts with the PatientWorthy community.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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