The Need For Narcolepsy Awareness

Why, you may ask, is there a need to raise awareness regarding a disorder that involves sleepiness?
Well for starter's, narcolepsy is so much more than the comical portrayals of PWN in Hollywood movies.

Excessive daytime sleepiness (EDS), sounds pretty harmless and is a large component of narcolepsy. In reality, EDS means uncontrollable sleep attacks, brain fog, fatigue/exhaustion, forgetfulness, lack of motivation, falling asleep at stop lights or while driving, falling asleep when sitting, falling asleep in the middle of a conversation, falling asleep in school, etc. Basically it's being tired every single day of your life.

Sleep attacks feel like an impending doom approaching. It truly does feel like a ton of bricks has been placed on your brain and eyelids. Survival instinct is to go somewhere, anywhere so that you can close your eyes for just a minute. Sleep attacks can occur at any time, anywhere- no mercy.

Automatic behavior is another element of narcolepsy. It's basically when your brain goes to sleep but your body keeps performing the task you were participating in. For instance, I regularly had automatic behavior during my night shift as an RN. I would "sleep walk" to the supply room for supplies and blankets, I would "sleep chart" (charting nonsensical nursing notes in patient's chart), I changed diapers while asleep, and the straw that broke the camel's back was that I started an IV (successfully, and no harm done!) on a newborn. The horror that comes with "what if" scenarios is almost too much to bear.

Cataplexy occurs with most, but not all narcoleptics. It is the most fascinating aspect to narcolepsy in my opinion. Sudden loss of muscle tone when experiencing emotion ( all the while being completely conscious). Check out my other posts for more in depth information regarding cataplexy.

Even though my blog promotes alternative healing and lifestyle choices, prescription meds are probably the biggest aid to fellow PWN. Some of the meds prescribed for narcolepsy can cost more than $8000 per month. Access to health insurance isn't always possible for people and medicare/medicaid sometimes deny coverage of these meds. Denial of coverage is most likely due to the dangers of these highly controlled drugs, Xyrem for example. Despite its risks, Xyrem has changed many PWNs lives, and they simply wouldn't have functionality or a high quality of life without it.
Access to meds as well as proper diagnostic and medical care are crucial for narcolepsy patients. PWN are experiencing job loss, are having their kids taken away, and are suffering from depression due to difficulties with their medical treatment.
Make an effort to increase awareness: "Like" a Facebook page supporting narcolepsy such as "Narcolepsy Network", "Wake Up Narcolepsy", or "Narcolepsy Naturally-", check out an informative resource such as www.NarcolepsyNetwork.com     www.julieflygare.com     http://psychiatry.syanford.edu/narcolepsy
or follow a blog like this one ;)

It is imperative that awareness is spread so that thousands of people with narcolepsy no longer need to suffer in silence, or be perceived as lazy, and are no longer invisible!