44 for 44

An estimated 1 out of 2000 people in the US has narcolepsy.  That translated into hundreds of thousands of people suffering from some or all of its debilitating effects such as excessive daytime sleepiness, sleep hallunications and suddent and unpredictable loss of muscle control (cataplexy.)  And we know that most of these individuals have no idea what is cuasing their symptoms.  In the meantime these individuals are often thought by those around them to be lazy, psychologically troubled or worse.

Recently the national AWAKEN survey, confirmed that awareness of narcolepsy is low.  This survey showed that:

• While most of those questioned agree that sleep in highly important to overall health, only half believe that narcolepsy significantly impacts health.
• 70% of adults have heard of narcolepsy, but of the 70% only 7% are very knowledgeable about narcolepsy.
• Only 24% of Physicians and 62% of sleep specialists consider themselves to be very knowledgeable about narcolepsy.
• Physicians are not always comfortable diagnosing narcolepsy. (9% for PCPs and 42% for sleep specialists)
• Even sleep specialiests do not fully recognize all of its symptoms, with only one-fifth (22%) successfully identifying all of them.  Also 22% reported to not very or not at all comfortable in diagnosing narcolepsy.

 

What does this have to do with me?  Well, for years I have struggled with various symptoms of Narcolepsy. On May 10th, 2012, I woke in the ER after have what was later diagnosed (on May 15th) as a Cataplexy attack on the way home from work.

Even then it wasn't until July 12, 2012 that I got the diagnosis of Narcolepsy from a Psychiatrist.  And, finally started treatment for it on July 26th. I had diagnosis of "Idiopathic Hypersomnia/Cataplexy" or "Sleep Apnea/Depression/Cataplexy" from my PCP or Neurologist/Sleep Specialist.  "Idiopathic Hypersomnia" basically means "Excessive Daytime Sleepiness with unknown cause."  In a previous visit, a psychiatrist told me that if I had walked in off the street, he would not have diagnosed me with depression. But, since my sleep doctor had made the diagnosis, and my PCP had read that prozac can help with cataplexy (it can also make it worse)...he wanted to try me on yet another antidepressant.  Also previous sleep doctor had tried an antidepressant as well.

The sleep doctor's criteria for depression....scoring more than 15 on a Beck's Inventory.... didn't matter that I scored points in areas like Fatigue, Insomnia, Diminished Concentration, Loss of Energy, Worrying about my Health....all things that an undiagnosed, untreated narcolepsy person might score high in.

So, I've personally experienced the lack of awareness in Narcolepsy.

 

So, my wish is to get 44 people to donate $44 to Narcolepsy Network, Inc. for my upcoming 44th birthday.