Add Narcolepsy/Idiopathic Hypersomnia as a qualified disabling condition in the Social Security Blue Book.
Public Comments (2,251)
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Aug 23rd, 2016Someone from Olney, MD writes:
Air, water, sleep, food. These are the things we need in order to function on a most basic level. Narcolepsy result in inadequate sleep and chronic sleep deprivation. It is often extremely disabiling. Tasks of daily living, such as simply taking a shower, can be exhausting for me due to narcolepsy. Anyone who really understands the devastating impact of narcolepsy is frustrated with the fact that it is not on the SS list of disabiling conditions. -
Aug 21st, 2016Someone from Austin, TX signed.
Aug 16th, 2016Someone from Livingston, NJ signed.
Aug 6th, 2016Someone from Knoxville, TN writes:
Having to manage my narcolepsy has been the hardest struggle I have. It took me 7 years of college to finally graduate because I could only do semesters at a time. Only take certain classes scheduled at the right times. I had to arrange my life around the immobility of institutes and employers to recognize narcolepsy as a "real disability. I struggle to do daily tasks when I am not taking my medication. With medication on good days, I get by with enough energy to interact and make it until the medicine wears off. I still worry about drive homes after long days. I have had 3 car accidents, two of which were results of my sleep attacks.REPORT COMMENTS
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No, CancelAug 5th, 2016Someone from Virginia Beach, VA signed.
Aug 5th, 2016Someone from Austin, TX writes:
I have narcolepsy and doing normal daily activities like showering and brushing my teeth can be hard. I'm someone who has tried all kinds of medicines without any positive affects. Narcolepsy can be extremely crippling and should be taken more seriously with social security.REPORT COMMENTS
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No, CancelAug 1st, 2016Someone from Oakland, OR signed.
Jul 31st, 2016Someone from Hanceville, AL signed.
Jul 31st, 2016Someone from Cullman, AL signed.
Jul 31st, 2016Someone from Logansport, IN writes:
As a person with Narcolepsy Cataplexy, it so misunderstood and debilitating. Living with this disorder is NOT a cakewalk and should not be taken so lightly. First step is for people who do not understand this disorder and All that comes with it really need to research and learn. PLEASE PLEASE ADD THIS TO THE LIST FOR DISABILITY! I was diagnosed in 2013 and since then my life has been a whirlwind of getting a hold of any and all information I can get my hands on. I have such difficulty waking to an alarm clock, have had to switch my routines, take medication that is so expensive but without it I do not function properly. Easiest way to explain to someone: "If you were awake for 72 hours straight, well that is how I feel on a daily basis". My type is to be 1 in 500,00. That should say enough to qualify for disability no matter what my education or age! It is a daily struggle to live with this disorder, and It SHOULD BE ADDED TO THE LIST, not only for myself but for many others who have this disorder.REPORT COMMENTS
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No, CancelJul 30th, 2016Someone from Norwich, CT signed.
Jul 25th, 2016Someone from Cottage Grove, MN signed.
Jul 25th, 2016Someone from Smyrna, NY signed.
Jul 22nd, 2016Someone from Cleveland, TN signed.
Jul 21st, 2016Someone from Dyer, IN writes:
Narcolepsy is horrible to live with- especially if you have no medication or insurance of any help. I would not last a day without medications and for that I fear for the lives of others.REPORT COMMENTS
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No, CancelJul 21st, 2016Someone from Cypress, TX signed.
Jul 19th, 2016Someone from Wisconsin Rapids, WI writes:
I have Idiopathic Hypersomnia and every day is difficult. I'm unable to hold a job because of the excessive sleepiness. None of the medications have worked for me. This condition has taken over my life (if you can call it that at this point) and I can do nothing about it. How can this and narcolepsy not be considered a disability. These conditions affect everything in your life and its out of our control.REPORT COMMENTS
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No, CancelJul 18th, 2016Someone from Iva, SC writes:
I was diagnosed 5 years ago. I've had issues long before I was diagnosed. I can't make it anywhere on time because it is so difficult to wake up. I wake up thinking about when I'm going to be able to nap. It adversely affects your work, relationships, mood, and ability to function day to day. It causes depression because you have no motivation to do anything.REPORT COMMENTS
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No, CancelJul 17th, 2016Someone from Las Cruces, NM writes:
Narcolepsy is a horrid, life destroying, disability. .REPORT COMMENTS
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No, CancelJul 17th, 2016Someone from Las Cruces, NM writes:
Narcolepsy is a horrid, life destroying, disability. .REPORT COMMENTS
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No, CancelJul 14th, 2016Someone from Windsor, CA signed.
Jul 13th, 2016Someone from Phoenix, AZ signed.
Jul 12th, 2016Someone from Belton, TX signed.
Jul 10th, 2016Someone from Virginia Beach, VA signed.
Jul 9th, 2016Someone from Nekoosa, WI signed.
Jul 6th, 2016Someone from Leland, MS signed.
Jul 6th, 2016Someone from Bassfield, MS signed.
Jul 6th, 2016Someone from Cedar Rapids, IA writes:
Had to drop school and work multiple jobs to afford expensive meds. I often struggle with productivity at work. Don't think I can ever finish school or get a good paying job with this disorder.its literally both dibilitating and depressingREPORT COMMENTS
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No, CancelJun 30th, 2016Someone from Kalamazoo, MI signed.
Jun 30th, 2016Someone from Kalamazoo, MI signed.
Jun 30th, 2016Someone from Kalamazoo, MI signed.
Jun 30th, 2016Someone from Rochester, MN signed.
Jun 30th, 2016Someone from Zumbrota, MN signed.
Jun 27th, 2016Someone from Bedford, TX signed.
Jun 25th, 2016Someone from Mesa, AZ writes:
There is absolutely NO way any Narcoleptic can work to live and survive with out medications and or assistance with insurance. I have been working two jobs to try to get by and then it worsens my Narcolepsy so I am at a catch 22....REPORT COMMENTS
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No, CancelJun 24th, 2016Someone from Norwich, CT signed.
Jun 24th, 2016Someone from Denver, CO writes:
I have Idiopathic Hypersomnia and it's a struggle every day to function. I have to rely on others to help me in the morning or when my pills wear off, hard to hold a job because I am unable to stay awake , scared to drive without my medicine and the medicine only helps to an extent and gives me chest pain yet I can't afford to not take it and risk losing my job or getting into an accidentREPORT COMMENTS
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