Add Narcolepsy/Idiopathic Hypersomnia as a qualified disabling condition in the Social Security Blue Book.
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May 5th, 2016Someone from Paulden, AZ signed.
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May 5th, 2016Someone from Stoughton, WI writes:
I have suffered terribly to maintain a 'normal' life while also suffering from this DISABILITATING neurological condition. i struggled through my late teens in school as my symptoms became noticeable, but excusable. I struggled while putting myself through college and symptoms became more evident and more difficult to excuse away. I lived, undiagnosed, for 12+ years which has caused severe and persistent emotional damage. After seeing a pamphlet randomly that explained all my symptoms, I struggled through testing to rule out epilepsy (considered a disability) and sleep studies. Diagnosis was a relief, but NOT an end to the struggle to MAINTAIN. I struggled to be alert enough to safely mother two children and to do so while going through a divorce AT LEAST partially to blame on undiagnosed symptoms. I struggled to keep up in the workplace, while falling asleep standing up and performing any monotonous task. I struggled to safely get to and from anywhere outside a 20-25 minute radius, falling asleep often and unavoidably while behind the wheel. I struggle to maintain any/all relationships. I struggle against increasingly severe depression and anxiety caused by my symptoms. I struggle to keep up with daily life and not let it affect my children. I struggle with different medications which give relief in some areas while simultaneously causing problems in others. I struggle to maintain schedules, appointments and deadlines as symptoms vary by day. My driving radius is limited to 10-15 minutes. Cataplexy (the condition where my body becomes paralyzed, typically following strong emotions like laughter, fear, sadness, etc. while simultaneously remaining fully conscious) has increased and become dangerous as I have less and less ability to control when/where I fall. I have had to purchase a disability bracelet for when I fall in public. It is embarrassing and hard to explain. I struggle against stereotypical 'Hollywood' definitions of what my disease is supposed to be. I fight against a lack of public awareness while narcolepsy still remains the butt of jokes and misportrayal in the media/advertising/movie/tv biz. For example, THIS YEAR Homer Simpson was diagnosed with narcolepsy to explain away all of his years of lazy and half-ass behavior. I am an educated, motivated, proud, hard-working individual by nature. I anticipate struggling to maintain some semblance of a 'normal' life for the remainder of mine, however my struggles are more than one person should have to deal with on a daily basis while there is still no cure in sight. While I never hope to need disability, I can not anticipate what my future holds. A person can only swim against the current for so long...May 5th, 2016Someone from Lynchburg, VA signed.
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May 4th, 2016Someone from Ewa Beach, HI writes:
Please, please listen. We are desperately in need of your attention and consideration. This disability was life changing for me. I went from a highly educated, active, over-achieving social worker willing and happy to do anything and everything for clients, family and friends to a recluse, unemployed, unable to work, drive or even to function beyond basic personal hygiene. Finding the right doctor was a five year struggle that caused me to begin thinking I was going crazy and finding the right medications was a blessing. Adjusting my lifestyle was necessary and while these interventions have helped me to function better than before treatment began, I'm no longer that active, over-achieving go-getter. I'm a slower, more methodical, reserved education counselor who wishes she had energy to play outside after work but it's all I can do to get home and help with dinner before bedtime. I'm grateful I'm able to work again to contribute to my family and I'm more functional than I was before treatment. However, this disability will be with me forever and I do not see it getting easier. No amount of medication and lifestyle adjustment would bring me back to my old self and that is just my sad reality. If my narcolepsy should start to progressively worsen, I may have to stop working again. I'm not even 40 years old. I'm too young to retire and I definitely don't want to be a burden on my family. This disability deserves the attention and designation for those of us who are unable to function even with all the interventions available to us. Please know, if we had our way, we would want our old lives back. I would love to be an underpaid social worker again. However, I can't go back. I've tried. It doesn't work and I feel more sick every time I try. If my condition worsens or the medications begin to lose effectiveness, there is no other option for me. Please listen.REPORT COMMENTS
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No, CancelMay 4th, 2016Someone from Sarasota, FL writes:
I myself have Narcolepsy cataplexy ideopathic Hypersomnia. This needs to be recongnised of.REPORT COMMENTS
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No, CancelMay 4th, 2016Someone from Sarasota, FL writes:
I myself have Narcolepsy cataplexy ideopathic Hypersomnia. This needs to be recongnised of.REPORT COMMENTS
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No, CancelMay 4th, 2016Someone from Denton, TX signed.
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May 4th, 2016Someone from Allendale, MI writes:
Current medications available to help treat people that have narcolepsy or idiopathic hypersomnia have side effects that often make it difficult to continue taking. They are also extremely expensive, and many insurance companies refuse to pay for them. Many people with this illness are already financially struggling,because they are unable to work full time, or must have special accomidations during working hours. Its difficult to find employers that allow naps, or special schedules needed for those with narcolepsy or idiopathic hypersomnia. Though the conditions are protected against discrimination, the reality is that no emplyer is going to hire a person like this,over a fully productive candidate. They can also find other, non illness related reasons to terminate your employment, when it really comes down to them not wanting to employ a person with special needs. Becomming unemployed is a constant concern for people that suffer with these illnesses.REPORT COMMENTS
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