Read this first.

I subscribe to Google Alerts. It’s a great little gadget; you enter your search terms, and it will notify you whenever Google finds a new article pertaining to your keyword(s). I’m sure it’s obvious my favorite keywords would be “narcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.,” “cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes,” and the like.

Sometimes, I don’t bother to look at the articles. I have so much going on, and many of them are repetitive blog posts that are great, but really don’t help in my pursuit of content for Planet NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.. At other times, like today, I take a moment to check out the item, especially if the source seems like somewhere many of my members and readers might be looking for information.

That’s when I often end up disappointed. It seems as though for all the legitimate information that gets put out on the web about NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes., three more items get posted that apparently have no basis in fact whatsoever.

In the article linked above, from the very first sentence, I knew we were in for it.

“People with narcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. sleep disorder suddenly fall asleep while they are watching television or reading, and in some cases even while eating or talking.”

Um, no. “People” with narcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. do none of those things. SOME people with narcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. may do those things, but those of us who zonk out with no warning mid-chew are very few and far between. Way to start an informative article with a public misconception.

The second paragraph just got better, describing symptoms of narcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. that included “hallucinations during sleep” and cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes that may be “followed by strong emotions.”

In 12 sentences, including “For more information on narcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes., see below,” I counted no less than 9 factual errors, mostly generalizations and outdated assumptions.

The second page was slightly better, at least mentioning cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes can vary from mild jaw slackening to full body collapse, but didn’t earn any confidence with its repeated re-naming of the disorder. As a patient fairly well-educated on the subject, I am quite surprised to learn of subtypes of this disease, including “CataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.” and “Sleep NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes..”

Even more interesting, I was unaware there is a third type of wakeful-dreaming, referred to as “hypnologic.”

My amusement quickly became anger when I read further, learning about how by using medications and dietary measures, narcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. can be completely overcome. Why didn’t anyone tell me this?

After emailing the editor with a quick remark about non-factual information and as much sarcasm as I could fit in 240 characters, I thought for a moment on what it means to have pieces like this easily accessible to patients, families, and even physicians looking for information and answers.

It actually scares me that this article is published. It scares me that it can’t possibly be the only one full of half-truths, contradictions, and false hopes. Can diet improve symptoms? Sure. Especially if you have hypnologic hallucinations.

How can we educate those around us about our condition if when they want to learn more, they find information directly in conflict with what we’ve tried to explain to them? We fight every day to make clear that “tired” doesn’t begin to describe how we feel, and how mere sleep hygiene and fewer carbohydrates do not qualify as effective treatments, and yet here is a “News” article outlining simple ways to practically cure ourselves.

We must learn to be aware not only of what information we are putting out into the world about narcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes., but what information others are putting out into the world. When sharing articles, make sure proper citations are noted on the article. Make sure there are links to actual medical, clinical reports, and verifiable knowledgeable institutions.

Guess what? Even Planet NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes. sometimes doesn’t count.

However, as part of our goal to spread awareness, we must include a goal to spread truth, and to remove the myths and misconceptions from being available at all.

With that in mind, I implore to you to go to the link above and contact the editor. Request the article be rewritten appropriately, or better yet, completely removed.

And when you see other articles and links to what amounts to stories and fantasy about our disease, I encourage you to do the same, and share with the rest of us.

Together, we can make a difference.

Apart, we are doomed to suffer hypnologic hallucinations “and other automatic behaviorPerforming regular tasks without being fully conscious or aware. May cook, clean, drive, or hold conversations and not remember. Almost always, the task is not performed entirely properly (notes are just scribbles, items put away in the wrong place, etc.).”

Copyright secured by Digiprove © 2011 Planet  NarcolepsyGreek meaning loosely "sleep seizure." Disorder marked by recurrent and uncontrollable attacks of daytime sleepiness, often associated with temporary muscular paralysis known as cataplexyCataplexysudden, brief loss of muscle control brought on by strong emotion or emotional response (laughter, excitement, surprise, anger, etc.) This may or may not cause full body collapse. In all cases, the patient is FULLY CONSCIOUS and aware but cannot move. Episodes last anywhere from a few seconds to many minutes.All Rights Reserved