Add Narcolepsy/Idiopathic Hypersomnia as a qualified disabling condition in the Social Security Blue Book.
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Apr 18th, 2016Someone from Corpus Christi, TX writes:
Until my 12 yr. Old granddaughter was diagnosed at age 8, I had no idea of how her life would change forever. Even she says, Na'Na I'm so tired of being tired. I remember when I used to run, play & feel so full of life. We will never get the same child back..even SHE knows that this disorder has changed her life, her future forever. Please help. -
Apr 18th, 2016Someone from Avoca, AR writes:
Ever have surgery and while in recovery you remember an overwhelming tiredness, fogginess, trying to get awake....that's what it feels like every single day for someone with narcolepsy. The more we fight to get awake or stay awake, it's useless...it overtakes our bodies and our minds. We can't function like we used to. Our thought processes are slowed, our memory fails us, our bodies are no longer under our control. Not enough doctors know about narcolepsy, most of the "normal" population have no clue. We are labeled as being lazy and worthless. We just want to be "normal" again. As an employer, would you want someone under the influence of anesthesia working for you?..causes all kinds of liability issues right? That's what being a person with narcolepsy struggles with. How do we work? How do we pay our bills? How do we stay awake long enough to take care of our families or ourselves? Many of us are nothing more than guinea pigs for the medical profession to figure out how to keep us awake and how to make us productive citizens again. We need congress to step in and make narcolepsy an automatic disability. There are tests for narcolepsy, you can't fake it. It's a neurological disorder. It's like living inside a body that doesn't move, that doesn't respond the way you tell it to, it doesn't function the way it supposed to. It's just like having Parkinson's disease or MS. It's a daily fight. Sounds easy to say, "just go to sleep then", not so easy to do because with having narcolepsy comes every other illness associated with the term "sleep". You have insomnia too when all you want to do is sleep, your brain suddenly wakes up and you can't sleep. No amount of sleep ever makes us feel refreshed and ready to conquer the daily task of getting up and getting dressed. This disease strips us of a normal life, a normal job, normal relationships, at just plain being normal.REPORT COMMENTS
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Apr 18th, 2016Someone from Mobile, AL writes:
My husband has Narcolepsy it is a very difficult condition for the whole familyREPORT COMMENTS
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Apr 18th, 2016Someone from Pflugerville, TX writes:
My husband suffers terribly with this debilitating condition as do many others.One who suffers from being robbed of full consciousness should not also be forced into the degradation of absolute dependency and abject poverty.REPORT COMMENTS
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Apr 18th, 2016Someone from Weyauwega, WI writes:
Please help them my girlfriend is narcoleptic and has cataplexy, they try so hard please help ?REPORT COMMENTS
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