I’ve met Julie Flygare, a passionate advocate for people with narcolepsy, who has a charming personality and is an engaging speaker. Last night I finished Julie’s book, Wide Awake and Dreaming: A Memoir of Narcolepsy, and learned that she is also an engrossing storyteller.
Julie starts the story as she enters law school as a high-achieving, athletic and social young woman. She details her weird symptoms—knees buckling during laughter, vivid nightmares and unusual sleepiness. As she struggles to concentrate on her studies and stay awake in classes, Julie chastises herself for a lack of self-discipline, never considering that it might be a physical problem. Like many rare disease patients, she struggles before obtaining a diagnosis. After a few doctors dismiss her symptoms, the mystery is unraveled by a sports medicine physician she is seeing for tendonitis.
What is narcolepsy with cataplexy?
Before reading this book, I had only a vague and comic idea of narcolepsy as someone falling asleep in the middle of a conversation. In fact, narcolepsy is a neurological autoimmune sleep disorder in which the brain loses the ability to maintain normal sleep and wake states. Julie also has cataplexy, a sudden muscular weakness brought on by strong emotions. Narcolepsy affects about 200,000 Americans, making it just barely rare enough to qualify for the definition of a rare disease.
The good news is that, unlike for most rare diseases, there are medications to treat narcolepsy. However, Julie learned that it wasn’t as simple as popping a pill and feeling like her old self again.
The medications affected when I slept, ate, and drove, and each one affected my symptoms differently and had side effects – some more tolerable than others. These drugs were not a cure for my narcolepsy, nor did they ‘normalize’ me by any means. However they did help me to achieve a much higher quality of life. Without these treatments, my life would have been entirely under the control of cataplexy and pervasive sleepiness. This was the reality of my condition that I had never fully lived, since I was lucky enough to start treatment just as my symptoms were becoming truly disabling. Thus, I tried to balance my frustrations with these drugs with my appreciation for their existence.
Julie movingly writes of her adjustment to her new reality and growing appreciation for her body and makes an inspiring vow, “Eventually, I’m going to make narcolepsy the best thing that ever happened to me. I’m going to turn it on its head.” The book shows how she achieves this by becoming an advocate and blogger, and even runs a marathon. I know I’m not doing this amazing story justice, so I highly recommend reading this book.
This blog was first published on SirenSong.
Eileen O’Brien has 16 years of interactive healthcare marketing experience. At Siren Interactive, a relationship marketing agency specializing in rare disease therapies, she leads search strategy, analytics, CRM and social media. She is considered a thought leader on social media and pharma, and was named as one of the top 50 women in healthcare on Twitter.