She's right, many people do say they haven't heard of Narcolepsy. I never heard of it until I was diagnosed with it. You may know more people than you think that have it. As she stated many people diagnosed with narcolepsy don't really tell people. I'm more open to share because I want people to learn. I don't want them to think it's like what they see on tv. It isn't.
Sleepiness is NOT laziness:
I didn't go looking to be diagnosed. Why would I want to be diagnosed with something where there is NO CURE. I really fall asleep all the time without treatment.Imagine not sleeping for 2-3 days straight. That’s how a person with narcolepsy feels daily. This sleepiness is neurological and uncontrollable and is not a sign of laziness or lack of will power.
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 help 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 schedules. No two cases of narcolepsy are exactly alike – what works for one patient may not work for another.
From what I understand it is just a neurological disorder. They are currently studying to see if it can be an autoimmune disorder also. Just because I'm sleepy doesn't mean I show I am.
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.
I have this problem. I fight sleepiness during the day but "disrupted nighttime sleep". It actually happened last night. I went to sleep but up within the hour or so. I couldn't go back to sleep for a while afterwards. My daytime sleepiness is regulated by medication. With the medicine I can maintain my physical activities. Without the medication, work school and more would be affected.
|I've joined the campaign; Will you?|
Julie Flygare has said it better than I could. When I was diagnosed I didn't know this was around, I'm glad I've found her and her website. I will continue to follow her and help educate myself and others.
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