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A bit angry about CAUSES

Posted by on Jan. 14, 2013 at 9:15 PM
  • 21 Replies

So my husband has narcolepsy. It's rare, so I didn't expect a huge support group or turn out or anything. He's been diagnosed for three years, and I found a website called "Narcolepsy Network" that answered a lot of my questions and whatnot. Otherwise, we've been dealing on our own.

So I got on a kick tonight... looking up narcolepsy awareness, research etc.

Ends up, there is none. Get this:

It is estimated that narcolepsy affects as many as 200,000 Americans, although fewer than 50,000 are diagnosed. Narcolepsy is as widespread as Parkinson's disease or multiple sclerosis (MS) and more common than cystic fibrosis, but it is not as well known. Narcolepsy is often mistaken for depression, epilepsy, or the side effects of medications.

This is a copy/paste from a stat site. What REALLY makes me mad is the fact that it's as widespread as some pretty common, largely researched and supported diseases, and more common than cystic fibrosis. Everyone knows about those. Everyone supports and does walks and whatnot....

but not narcolepsy. There was a walk last year in DC. I live in Colorado. We aren't in a position to travel that far. But there is NOTHING out there for us to support or promote. No charity that is raising money and awareness and helping find a cure.

Another fact I read....

"Studies indicate narcolepsy’s affect upon quality of life is comparable to epilepsy and Parkinson’s disease."

Really?! And no one bothers to say anything? I mean, I know it's a struggle for us. And it's REALLY HARD. But I don't know what its like to struggle with Parkinson's or epilepsy.  All I know is that when I hear those things, I feel TERRIBLE for the person facing that, and I assume it must be a very difficult life. I had no idea I was already living it.

Particularly because my husband falls into the most rare category. Of 250,000 Americans who HAVE narcolepsy, only 50,000 are diagnosed. Of those, less than 1,000 have ALL FOUR SYMPTOMS. My husband has all four. And they are extreme.

Anyway, all this time I have been sucking it up because I figured if it was THAT BAD, someone would have created an awareness campaign or something.

But no one has. (sorry about the fonts... idk why cafemom won't let me change them....).

Anyway, so I want to get this started. I want to see more people getting the right diagnosis and more research and funding for this. There's no cure, there's no real treatment.

Anyone know how to do something like this?

I attached a fact sheet on the disorder in the first comment. So at the very least, YOU have become aware!!!

:)

by on Jan. 14, 2013 at 9:15 PM
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Replies (1-10):
livn4hevn
by on Jan. 14, 2013 at 9:17 PM

What is narcolepsy?

Narcolepsy is an autoimmune neurological sleep disorder affecting 1 in 2,000 people. Over 200,000 Americans and 3 million people worldwide have narcolepsy. Narcolepsy is not rare, but severely under-recognized and misdiagnosed as other disorders.  It most often presents itself in childhood, adolescence or young adult, and lasts a lifetime.  Narcolepsy’s effect on quality of life compares to Parkinson’s disease and epilepsy. There is currently no cure.

Narcolepsy is a serious and common medical condition. It offers researchers a unique opportunity to learn about the central mechanisms of REM/dream sleep and alertness.

What are the symptoms?

The four major symptoms associated with narcolepsy are:

  • Excessive daytime sleepiness (EDS) – episodes of extreme sleepiness experienced throughout the day, comparable to how one would feel after staying awake for 48-72 hours straight.
  • Cataplexy - a sudden episode of muscle weakness triggered by emotion, resulting in the inability to move while awake.  The weakness may be a buckling in the knees, the head dropping or jaw slackening.  Often, emotions such as humor, elation, surprise or anger trigger the weakness. In severe cases, an individual might fall down and become completely paralyzed for a few seconds to several minutes. Reflexes are abolished during the attack. Considered the pathological equivalent of REM/dream sleep atonia unique to narcolepsy.
  • Hypnagogic and hypnopompic hallucinations - auditory, visual or tactile hallucinations, while falling asleep or waking up. These vivid dream-like experiences can be very frightening, life-like and confused as reality.
  • Sleep paralysis -  the inability to move upon falling asleep or waking up. The paralysis may last a few seconds to a few minutes during which time one is unable to move. A frightening symptom considered to be an abnormal episode of REM/dream sleep atonia.

Other symptoms may include:

  • Most people who have narcolepsy don’t sleep well at night. They may have trouble falling and staying asleep. Vivid, scary dreams may disturb sleep. Not sleeping well at night worsens daytime sleepiness.
  • Automatic Behavior – when you’re not aware of your actions, so you don’t do them well. For example, if you’re writing before falling asleep, you may scribble rather than form words. Most people who have this symptom don’t remember what happened while it was going on.
  • Children who have undiagnosed narcolepsy often have trouble studying, focusing, and remembering things. Also, they may seem hyperactive. Some children who have narcolepsy speed up their activities rather than slow them down.

Is it possible to have narcolepsy without having all of the symptoms?
Yes, not everyone with narcolepsy experiences all of the symptoms nor to the same degree.

Are there different kinds of narcolepsy?
Yes, there are two forms of narcolepsy, Narcolepsy with Cataplexy (N+C) and Narcolepsy without Cataplexy (N-C).

  • In N+C, an autoimmune reaction destroys the brain’s 70,000 hypocretin-producing cells. Hypocretin neurotransmitters are essential to proper regulation of sleep and wakefulness.
  • The cause(s) of N-C are not well understood.

Are people born with narcolepsy?
People are not born with narcolepsy. Generally, symptoms become apparent during childhood, adolescence or early twenties, however, children as young as three years old have been diagnosed.

Who gets narcolepsy?
Narcolepsy affects both males and females equally and appears throughout the world.

How common is narcolepsy? 
Narcolepsy is a frequent disorder, affecting 1 in 2,000 people – over 200,000 Americans and 3 million people worldwide.  In other parts of the world, such as Japan, narcolepsy appears as frequently as 1 in every 500.

frndlyfn
by Platinum Member on Jan. 14, 2013 at 10:26 PM

Talk to your city council about having a walk for this disorder.  I know at least 5 different people with .  Talk to local businesses to see if they would want to sponser an awareness event.

UpSheRises
by Bronze Member on Jan. 14, 2013 at 10:39 PM
Research costs money. Learn how to fundraise and start a non profit advocacy group.
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tossed
by Member on Jan. 14, 2013 at 10:58 PM

Does he have a doctor who works with him? Maybe the dr has some suggestions. Good luck. 

tossed
by Member on Jan. 14, 2013 at 11:01 PM

The American Sleep Association sponsors Narcolepsy Awareness Week. From their website.

Narcolepsy Awareness Week is sponsored by the American Sleep Association. From December 1 - 7, the ASA and its affiliates will be increasing awareness about narcolepsy.

The primary objective of this campaign is to improve the nation's knowledge about the signs, symptoms, complications, diagnosis, and treatment options of narcolepsy.

tossed
by Member on Jan. 14, 2013 at 11:02 PM

There is a facebook page for Narcolepsy research and awareness. They might join you.

http://www.facebook.com/NarcolepticMamaceta

livn4hevn
by on Jan. 14, 2013 at 11:08 PM

there is also "wake up narcolepsy" an NPO that does walks and whatnot... they have a FB. I contacted them about activities in Colorado but they seem to operate mostly on the EAST coast. I'll def add this group as well.

Maybe i should start my OWN FB group....

Quoting tossed:

There is a facebook page for Narcolepsy research and awareness. They might join you.

http://www.facebook.com/NarcolepticMamaceta


livn4hevn
by on Jan. 14, 2013 at 11:10 PM

Yes! There is also a less formal awareness week the first week of March. I'm hoping that if I can get a good group of supporters in my area, we might be able to organize something!

Quoting tossed:

The American Sleep Association sponsors Narcolepsy Awareness Week. From their website.


Narcolepsy Awareness Week is sponsored by the American Sleep Association. From December 1 - 7, the ASA and its affiliates will be increasing awareness about narcolepsy.

The primary objective of this campaign is to improve the nation's knowledge about the signs, symptoms, complications, diagnosis, and treatment options of narcolepsy.


livn4hevn
by on Jan. 14, 2013 at 11:10 PM

A great suggestion! thank you!

Quoting tossed:

Does he have a doctor who works with him? Maybe the dr has some suggestions. Good luck. 


tossed
by Member on Jan. 14, 2013 at 11:14 PM

http://www.narcolepsynetwork.org/get-involved/awareness/

Narcolepsy Network....

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