(And the not-so perks)
The Narcoleptic Argentinean from Moulin Rouge!
I know this topic doesn’t really mesh with the usual content on this blog, but this is a topic very important to me. I’m writing this in order to spread awareness of Rare Disease Day. Their website describes Rare Disease Day is an “international advocacy day to bring widespread recognition of rare diseases as a global health challenge.” Since I’m too lazy to summarize and find new words to express these facts, I shall state the website verbatim. ”In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2011, our focus is on disparities in access to services and treatment.”
(For more info on this day and organization, check out their respective websites here: Rare Disease Day and NORD.)
In the summer of 2010, I was diagnosed with narcolepsy. Trust me, I was more dumbfounded than you probably are now. For years I had complained of consistent fatigue that never seemed to go away and seemed to only get worse over time. Tiredness is such a ubiquitous symptom. Whenever I’d bring up my concerns to a doctor, I was always told variations of the same thing. “You need to get more sleep.” “Just eat healthier and exercise.” “Take some vitamins.” “You’re probably depressed. Here’s some anti-depressants.” While frustrating, in retrospect it’s not surprising I got these answers. I mean, what high school or college student isn’t always tired? Well last summer I had enough and took it upon myself to go to a sleep doctor, when I had to undergo two tests: a polysomnogram and the multiple sleep latency test (MSLT). I’ll spare you all the boring details and medical jargon. Basically they studied me when I slept at night (creepy) and took scheduled naps throughout the day….all while having a bunch of obnoxious wires stuck all over my head and body. I looked like an ER patient. How you’re supposed to sleep normally with all this crap is beyond me. That said, I shall put aside all my insecurity and superficiality to show you this hilarious photo of myself before the tests:
Attractive, right? I had to wash my hair 3 times before I could get all the gunk out. Gross.
Moving on. So yeah, my doctor got my results back and called me in. He flipped through the results one more time, looked up at me and said, “Congratulations. You have narcolepsy.” Then shook my hand. (No joke. He’s actually a really cool guy though.) My brain then proceeded to project clips from Moulin Rouge! in my mind. All of the crazy guy known as the narcoleptic or unconscious Argentinean, who would enthusiastically yell/sing/dance and randomly drop to the floor. “Um, what? How is that possible. Don’t narcoleptics like, fall asleep in the middle of talking or pass out in a bowl of soup? I’ve never done that.” I replied. My doctor said, “Some do, but many don’t.” He then progressed to tell me more about narcolepsy, and how it’s actually an extremely complex and undiagnosed neurological disorder that effects everyone differently. Bottom line is that it’s a neurological disorder that makes it almost impossible for the brain to regulate the awake/sleep cycle. Along with this, the order and length of NREM and REM sleep periods are disturbed and the overall pattern of sleep stages is erratic. This is often what is observed during the sleep tests, thus making it a key part in the diagnosis. In other words, when most people fall asleep the brain waves become slower and less regular (NREM). After around 90 minutes, you enter REM sleep where your brains waves go crazy and you start to dream about your marriage to James Franco or showing up to school naked. Well us narcoleptics are non-conformists. We like to enter REM sleep within 10 minutes or less, and as a result, it causes some freaky stuff.
Enough of boring medical explanations! Time for some listing baby!
Read onto page 2 s’il vous plaît……
