You Should Know Someone With Narcolepsy… Her Name Is Julie Flygare

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Meet Julie Flygare. She got her BA from Brown University (2005) and her JD from Boston College Law School (2009). She’s a published author, non-profit founder, blogger, yogi and runner who has conquered both the Boston Marathon and the steepest road race in the U.S. This accomplished WYSK also has narcolepsy and she’s on a mission to smash the stereotypes of this “invisible” disorder that’s NOT like it is in the movies.

Narcolepsy is a misunderstood neurological autoimmune disease that affects 200,000 Americans and 3 million people worldwide. The debilitating sleep disorder is characterized by the brain losing its ability to maintain normal sleep and wake states.

Julie was diagnosed with both narcolepsy and cataplexy (sudden loss of muscle tone while awake, resulting in the inability to move for as long as several minutes) in 2007. Since, she has become a loud and proud narcolepsy advocate, leading a powerful movement to change public perceptions of the disease and to empower patients to live well despite their adversity.

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The first stop on her awareness raising tour was Harvard Medical School. What could SHE teach THEM? A lot, as it turns out. Narcolepsy is such an under-recognized neurological disease that even many doctors are unfamiliar with it. After learning this, Julie collaborated with the school’s esteemed researchers in 2009 to establish a 5-hour educational program based on her personal story. That curriculum is now taught to all Harvard Med students.

Julie_Sleep WeekTwo years later, Julie made her cause public and organized her very first “Sleep Walk” in Washington DC. Designed to celebrate the importance of sleep, it earned her the National Public Awareness Award from Narcolepsy Network. Today, “Sleep Walk” has grown to become the signature event series for Project Sleep, the non-profit Julie recently founded to further her mission.

Within her body of impressive advocacy work is the award-winning book Julie authored – “Wide Awake and Dreaming: A Memoir of Narcolepsy” – along with “Narcolepsy: Not Alone”, an international social media campaign she launched to prove that narcolepsy is real and that the people who suffer from it are not alone. To date, the campaign has received over 1,000 photos from all 50 States and 37 countries, and continues to empower young people with narcolepsy to feel proud and speak out about their condition.

Narcolepsy Not Alone Campaign

A dynamic champion for sleep health and sleep disorders, Julie has amassed a comprehensive arsenal of narcolepsy resources. In addition to her blog “REM Runner”, which is all about running and living with narcolepsy, she produces an information packed YouTube video series, and created the first ever narcolepsy infographic and mobile app, both of which are designed to help people better explain the disease to their peers, teachers, co-workers, friends and family members.

When WYSK first came to know of Julie, she was described as, “a dynamo Rock Star, who accomplishes everything she does with grace, humility, courage, and strength, all while dealing with the difficulties, the naps, the treatments, the ongoing effects, and stereotypes of narcolepsy.” She more than lives up to that introduction.

But we think her friend Carrie Bollino hit the nail on the proverbial head when she told us, “Julie is simply, as we New England girls like to say, ‘Wicked Awesome.'”

We could not agree more.

10 Things You Should Know About Narcolepsy

narcolepsy-fact 1010. It’s not like the movies
Rat Race, Deuce Bigalow: Male Gigolo and Moulin Rouge feature comical characters with narcolepsy. Falling asleep mid-sentence may happen in real-life, but it’s not the typical everyday experience. Narcolepsy is more than sleepiness, involving other serious symptoms and it’s not a joke.

9. People with narcolepsy do NOT sleep all the time
Individuals with narcolepsy may fight sleepiness during the day but be unable to sleep at night. “Disrupted nighttime sleep” is a major symptom of narcolepsy.

8. Emotions may cause paralysis
Everyday emotions like laughter, surprise or annoyance may cause temporary muscle paralysis (knee-buckling, head dropping or collapsing to the ground unable to move). This is cataplexy, a scary symptom unique to narcolepsy. Not everyone with narcolepsy has cataplexy.

7. Napping is not a luxury
People with narcolepsy are not “lucky” to take naps, they are experiencing extreme physical sensations. Napping is often inevitable, unwelcome and difficult to plan for in most school or work settings.

6. Terrifying Hallucinations
Ever woken up but been unable to move your body? This is sleep paralysis, which happens to 1/3rd of all people, but happens more frequently in narcolepsy. Sometimes accompanied by visual, auditory or tactile hallucinations as REAL as reality. This redefines “living a nightmare”.

5. Doctors don’t know narcolepsy
According to a recent study, 91% of primary care doctors and 58% of sleep specialists are NOT COMFORTABLE diagnosing narcolepsy. Only 22% of sleep specialists could name all five major symptoms. As a result, people go undiagnosed for 3 to 25 years. Misdiagnoses include epilepsy, depression, and schizophrenia.

narcolepsy-fact 44. Sleepiness doesn’t always LOOK sleepy
Narcolepsy’s sleepiness may manifest as hyperactivity, irritability, moodiness, attention deficits, fogginess, or memory problems. These behavioral and cognitive changes are very real, but not what we think of “sleepiness” – i.e. droopy eyelids, yawning or nodding off.

3. Neurological disorder without a cure
Narcolepsy is believed to be an autoimmune neurological disorder, caused by the gradual loss of neurons (called hypocretin or orexin) which help regulate waking, sleeping and dreaming. There is currently NO cure or replacement for the lost neurons. Patients manage with multiple medications and diligent attention to their health and schedules. No two cases of narcolepsy are exactly alike – what works for one patient may not work for another.

2. Sleepiness is NOT laziness
Imagine not sleeping for 2-3 days straight. That’s how a person with narcolepsy feels daily. This sleepiness is neurological and uncontrollable and is not a sign of laziness or lack of will power. If I felt like being lazy, I would watch TV or play games. Sleep is not all that fun, I don’t even remember it.

1. You know someone with narcolepsy
Narcolepsy affects 1 in every 2,000 people – 200,000 Americans and 3 million people worldwide, including many children. Narcolepsy is invisible, we may look “healthy” on the outside while fighting internally or behind closed doors. Misperceptions cause many to keep it private. Yet, people with narcolepsy are your friends, neighbors and colleagues.