Many People with Narcolepsy Go Undiagnosed
SPRINGFIELD, Mass. (WGGB) — It’s a disease that affects an estimated three million people around the world — but more than half will never be diagnosed.
We’ve seen portrayals of narcolepsy in movies and television, but what is living with the disorder really like?
Teenagers need a lot of sleep, but as East Longmeadow native Danielle Bousquet entered adolescence, she realized she was catching a lot more z’s than her classmates.
“I used to get up in the morning and take a shower and just lay down in the shower and fall asleep for a half hour, because I just couldn’t get up in the morning,” Bousquet explains.
And for 12 years, those symptoms got progressively worse.
“When I got into my Masters degree, it was probably closer to 14 to 18 hours a day that I was sleeping,” Bousquet says.
Doctor visit after doctor visit yielded little answers. It wasn’t until she turned 24 that she was finally and properly diagnosed.
Bousquet adds, “The doctor kind of looked down my chart and said ‘Why are you on Zoloft?’ And I said, well I’m very depressed, and he said ‘You’ve gotta be the least depressed person I think I’ve ever met.’ But I said I can’t get up in the morning, so he starts looking through my history and says, ‘Yeah, I don’t think you’re depressed. I think you’re narcoleptic.”
Baystate Sleep Specialist Dr. Karin Johnson says narcolepsy can be mistaken for other disorders, because — like depression or sleep apnea — patients are simply tired all the time.
“A lot of people with narcolepsy have a problem with staying awake, but also staying asleep,” Johnson says.
Dr. Johnson says there are two forms: narcolepsy with and narcolepsy without cataplexy.
“What cataplexy is is not that they’re falling asleep, but that their muscles turn off, so suddenly they become weak and fall to the ground and can’t move for a period of time. You have a strong emotion. For some people, it’s laughter, surprise, strong happiness and you just drop,” Johnson adds.
“I’ve shattered my jaw once. I’ve had a couple of concussions, but for the most part have been really lucky,” Bousquet notes.
Bousquet has also experienced several other symptoms associated with narcolepsy – vivid, dream-like hallucinations, paralysis shortly after waking. micro-sleeps, and automatic behavior.
“I used to, when I was teaching, actually fall asleep in the middle of class and continue teaching.”
Though she still needs to squeeze in the occasional nap, Bousquet now has control of her symptoms through medication and an online support group to guide her through the ups and downs of living with narcolepsy.
The American Sleep Association estimates that as many as 200,000 Americans are living with narcolepsy, but fewer than 50,000 have been properly diagnosed.