Living with Narcolepsy can make you feel alone…
The many years spent trying to get the proper diagnosis, the attempts to try to control the symptoms of narcolepsy, and countless efforts to help teachers and family members understand what it is like to live with narcolepsy can truly take its toll.
Being the person that is the 1 in 2,000 that suffers from this sleep disorder, can be very lonely. Wake Up Narcolepsy was founded to help people with narcolepsy and their families act as a community. Telling your story is just one way to help spread awareness and more importantly, help that person who is either newly diagnosed or not yet diagnosed, feel just a little less alone.
Hear from our courageous community about their own personal journey from their symptoms, to the diagnosis and how they are living with narcolepsy.
Hear from three teenagers diagnosed with narcolepsy
Once upon a time, there was a very shiny girl. She shimmered and dazzled. She loved the sunshine and
loved to laugh.
She would run into the ocean and swim after the fish
She would pick flowers and then feel a tad guilty about
She laughed and played and ran and jumped and loved and sometimes cried. Shiny Girl even loved crying because she could brush away her tears and start all over the next morning.
Sometimes Shiny Girl would stretch out on her bed and feel the luxury
of the sheets under her. When she went to sleep, she would find the
sweet spot cradled in her bed. When she woke up, she danced around,
put on her running shoes, and and went to run on the beach.
That was back when she was alive.
One day, Shiny Girl woke up and just couldn’t get out of bed. That’s
okay, she thought. I LOVE to be in bed. I’ll wake up tomorrow.
Tomorrow came and still, she was tired. The thing was though, she
didn’t want to be in bed. She didn’t feel like a purring cat nestled
into her own domain. Instead, she felt like an overworked employee to
sleep who hadn’t been paid. I’ve slept for days, thought
Shiny Girl, why am I still tired?
Monica Gow, Co Founder of Wake Up Narcolepsy tells her story on Fox 25
Tabitha Crawford, founder of Awaken the Cure tells her son’s story
Tell Us Your Story about Living with Narcolepsy
If you want to share your story to help others feel less alone, or help other families cope with living with a child with narcolepsy, please contact us. You can take a video with a smart phone or just send us an email. We would love to hear from you!