World Narcolepsy Day Fundraiser

Rachel Crosley-Lyons

I have the unique perspective of being both a narcoleptic and a sleep researcher. I’m a 2nd year doctoral student at the University of Southern California; my research leverages wearable devices and emerging mHealth technologies to examine behaviors and real-time psychological states across the full 24 hours. I was diagnosed with narcolepsy when I was 20 years old, but had struggled with debilitating symptoms, bouncing from doctor to doctor, for a few years before that. And like many people with narcolepsy or related hypersomnias, I have experienced firsthand the devastating stigma of “invisible” chronic illness, the anxiety of back-ordered prescriptions, the ever-present weight of sleepiness. My day-to-day reality revolves around the timing of my next dose of Adderall. Sometimes I forget what life was like before narcolepsy came crashing in—how it felt to be fully awake. Was it really eight years ago?

But then, I look at how many wonderful things have happened in the time since. College; marrying my husband, Sam; getting my master’s degree; moving to Los Angeles for my PhD; adopting our pug puppy, Beans. All the adventures and the stories and the growth. Narcolepsy has contributed to who I am today: a far grittier, more compassionate, more confident version of myself than who I was before. I’m also a pro napper now (haha)!

I know that I’m one of the fortunate ones—that as many as 50% of narcolepsy cases remain undiagnosed, and that it can often take up to 10 years for patients to get a definitive diagnosis. I also know that, given recent budget cuts at the federal level for sleep research, donations are needed now more than ever before to fund the nation’s top laboratories working to identify a cure and prevent future cases. So during the month of September leading up to World Narcolepsy Day (the 22nd), I’m partnering with Wake Up Narcolepsy to raise money in support of patient advocacy and clinical research. If you’d like to join me (first of all, I’m so humbled– THANK YOU!), you can do so by sharing this fundraiser or by donating via the provided link.

Sleepy or not, here we come.

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