snarcolepticrosencrantz

snarcolepticrosencrantz:

Happy Sleepy Saturday, Tumblrians! 

For those of you who don’t know, 8th March is Narcolepsy Awareness Day! What is narcolepsy, you say? 

Although the most iconic aspect of narcolepsy is the cataplexy, this loss of muscle tone is notthe main symptom of narcolepsy. Narcolepsy is categorized by Excessive Daytime Sleepiness (EDS). Essentially, this EDS is comparable to a person staying up 48-72 hours. 

Here are 10 quick things most people don’t know about Narcolepsy (x):

  1. It’s not like the movies. Falling asleep mid-sentence may happen in real-life, but it’s not the typical everyday experience. Narcolepsy is more than sleepiness, involving other serious symptoms and it’s not a joke.
  2. People with narcolepsy do NOT sleep all the time. Individuals with narcolepsy may fight sleepiness during the day, but be unable to sleep at night. “Disrupted nighttime sleep” is a major symptom of narcolepsy.
  3. Emotions may cause paralysis. Everyday emotions like laughter, surprise, or annoyance may cause temporary muscle (knee-buckling, head dropping, or collapsing to the ground unable to move). This would the iconic cataplexy and again, not very person with narcolepsy has it.  *IMPORTANT* When someone is cataplectic, they are not asleep and they can hear you. Therefore, please be kind.
  4. Napping is not a luxury. People with narcolepsy are not “lucky” to take naps, they are experiencing extreme physical sensations. napping is often inevitable, unwelcomed, and difficult to plan for in most school or work settings. 
  5. Terrifying Hallucinations. Ever woken up, but been unable to move your body? This is sleep paralysis, which happens to 1/3rd of all people, but happens more frequently in narcoleptics. Sometimes accompanied by visual, auditory, or tactile hallucinations as REAL as reality. These are called hypnagogic hallucinations
  6. Doctors don’t know about narcolepsy. According to a recent study, 91% of primary care doctors and 58% of sleep specialists are NOT comfortable diagnosing narcolepsy. Only 22% of sleep specialists could name all five major symptoms. As a result, people go undiagnosed for 3 to 25 years. Misdiagnosis include epilepsy, depression, and schizophrenia, 
  7. Sleepiness doesn’t always LOOK sleepy. Narcolepsy’s sleepiness may manifest as hyperactivity, irritability, moodiness, attention deficits, fogginess, or memory problems.  These behavioral and cognitive changes are very real, but not what we think of “sleepiness”- i.e. droopy eyelids, yawning, or nodding off.
  8. Neurological disorder without a cure. Narcolepsy is believed to be an autoimmune neurological disorder, caused by the gradual loss of neurons (called hypocretin or orexin) which helps regulate waking, sleeping, and dreaming. There is currently NO cure or replacement for the lost neurons. Patients manage with multiple medications and diligent attention to their health and schedule. No two cases of narcolepsy are exactly alike- what works for one patient may not work for another. 
  9. Sleepiness is NOT laziness. Imagine not sleeping for 2-3 days straight. That’s how it feels daily and this sleepiness is neurological and uncontrollable. 
  10. You know someone with narcolepsy. Narcolepsy affects 1:2,000 people. Narcolepsy is invisible, we may look “healthy” on the outside while fighting internally or behind closed doors. 

Today, 08 March 2014, check out Julie Flygare’s International Narcolepsy Webcast at 4pm (EST).

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