Add Narcolepsy/Idiopathic Hypersomnia as a qualified disabling condition in the Social Security Blue Book.
Public Comments (2,251)
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Jul 5th, 2019CRYSTAL s. from Federal Way, WA writes:
SIGNED/ PLEASE HELP BY LISTENING!! -
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Jun 27th, 2019Samuel M. from Tucson, AZ writes:
As a narcolepsy sufferer whose life is on hold due to the debilitating nature of this sleep disorder, I am making a plea for our government leaders to place it on the disability list. Anyone living with narcolepsy has difficulty functioning as a family member much less an employee. Thanks.REPORT COMMENTS
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Jun 24th, 2019Jessica H. from Mechanicsville, VA signed.
Jun 24th, 2019Someone from Mechanicsville, VA signed.
Jun 1st, 2019Linda D. from Oxford, MA writes:
Any disease that someone you love has is worth your attention. These people are someone's loved one. They don't have the energy & wherewithal to advocate for themselves.REPORT COMMENTS
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No, CancelJul 10th, 2018Ivonne L. from Milwaukee, WI writes:
Please add Narcolepsy to your Social Security Blue Book, I am a patient and have this disabling condition in addition I also have Cataplexy, paralysis, IH, and Hallucinations. I have lost so much because of this I have lost doctors for being so sleepy and not being able to be on time because of lack of medication which is another factor. I have lost family, friends due to this and no one understands what we go through on a daily basis everyday there are times that I wish I didn't exist. I was diagnosed when I was 32 years old now I am 56 years old. I only could say this gets worse as you get older and yet we have no voice no one to care or understand what we have to endure everyday in order to survive. I even have to have a power chair to ride because I barely walk due to Cataplexy which have damaged my lymphatic system and I have no help or no one to understand me. Please if you care for many of us that goes through this on a daily basis help us you have the power to embrace many of us suffering from this chronic and disabling condition. I think there is a big need that many need to know and an awareness to help the many patients, people that are going through this detrimental rare disease the losses and loneliness that it brings along for the lack of misunderstanding what we have to endure on a daily basis in order to stay awake and survive.REPORT COMMENTS
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No, CancelMar 20th, 2018Chantell B. from Minot, ND signed.
Mar 20th, 2018Tabbitha S. from Louisville, OH writes:
Please add Narcolepsy and diagnosis to disability. This is an incurable autoimmune disorder with little treatment optuons for control of this disorder. It affects every part of a person's ability to function independently.REPORT COMMENTS
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No, CancelMar 20th, 2018Tabbitha S. from Louisville, OH writes:
Please add Narcolepsy and diagnosis to disability. This is an incurable autoimmune disorder with little treatment optuons for control of this disorder. It affects every part of a person's ability to function independently.REPORT COMMENTS
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No, CancelJan 30th, 2018Ashley A. from Atascadero, CA writes:
Please add Narcolepsy and diagnosis to disability. This is an incurable autoimmune disorder with little treatment options for control of this disorder. It affects every part of a person's ability to function independently.REPORT COMMENTS
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No, CancelJan 22nd, 2018Katherine A. from Wills Point, TX signed.
Jan 18th, 2018Karin L. from Grimes, IA writes:
Please add Narcolepsy and diagnosis to disability. This is an incurable autoimmune disorder with little treatment optuons for control of this disorder. It affects every part of a person's ability to function independently.REPORT COMMENTS
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No, CancelJan 18th, 2018Karin L. from Grimes, IA writes:
Please add Narcolepsy and diagnosis to disability. This is an incurable autoimmune disorder with little treatment optuons for control of this disorder. It affects every part of a person's ability to function independently.REPORT COMMENTS
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No, CancelJan 18th, 2018Karin L. from Grimes, IA writes:
Please add Narcolepsy and diagnosis to disability. This is an incurable autoimmune disorder with little treatment optuons for control of this disorder. It affects every part of a person's ability to function independently.REPORT COMMENTS
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No, CancelJan 17th, 2018Sheila A. from Boonville, NY writes:
Please help. I loved my job as Driving School Bus . was looking forward to retirment. As I caught myself with dangersymtoms of sleep apnea on a safety Vidio at work. I have went on comp. Diagnosed with narcolepsy in 2014. Now on public assistance. Medicade some food stamps . snap.. Now diagnosed Idiopathic Hypersomia.and sleep apnea. Sleepyness is worse some days. Also have SSDI cache pending.REPORT COMMENTS
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No, CancelDec 26th, 2017Someone from Greensboro, NC signed.
Nov 20th, 2017Brandi M. from Farmington, NM writes:
I worked very hard my entire life, building a career, continuing my education, and being a productive citizen until at the age of 34 I was diagnosed with Idiopathic Hypersomnia. I was always tired, I began showing up to work late, I started napping in the middle of work, I couldnt get out of bed. My children thought I was always sick. I was fired from my job and now I am pending social security (I am on year 2 currently). Living with a sleep disorder is like living with constant sleep deprivation. It is horrible.REPORT COMMENTS
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No, CancelOct 29th, 2017Kristin B. from Etters, PA signed.
Oct 3rd, 2017Lindsay C. from Island, KY signed.
Sep 11th, 2017Charles B. from Janesville, WI signed.
Aug 23rd, 2017Someone from Oklahoma City, OK signed.
Aug 5th, 2017Someone from Aurora, MO signed.
Jul 31st, 2017Someone from Clarkston, MI writes:
The effort that it takes to even put this together is MASSIVE. I would much rather be working or sleeping. So far. I am lucky. I haven't lost my job yet (although now it IS in jeopardy). I can't quit working , but the sleepiness makes it very difficult to function. I am divorced, and a single mother. I do not have a social life-that would entail being able to put sentences together when I can't even get my eyes to focus!!! I've worked so hard and so long for what I have, and yet could lose it because those in government don't want to hear about it/consider it. I HATE this. It would be wonderful if our government DID care enough about the citizens to include HYPERSOMNIA to a cause to fight for!REPORT COMMENTS
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No, CancelJul 31st, 2017Someone from Clarkston, MI writes:
The effort that it takes to even put this together is MASSIVE. I would much rather be working or sleeping. So far. I am lucky. I haven't lost my job yet (although now it IS in jeopardy). I can't quit working , but the sleepiness makes it very difficult to function. I am divorced, and a single mother. I do not have a social life-that would entail being able to put sentences together when I can't even get my eyes to focus!!! I've worked so hard and so long for what I have, and yet could lose it because those in government don't want to hear about it/consider it. I HATE this. It would be wonderful if our government DID care enough about the citizens to include HYPERSOMNIA to a cause to fight for!REPORT COMMENTS
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No, CancelJun 28th, 2017Joe M. from Charlotte, NC writes:
I was diagnosed with norcolepsy/cataplexy in '96 (or '95, I can't remember). I continued working until several years after my doctor said I should quit. This was only possible because of an extraordinary administration and top notch work on my part. It was quite a struggle, but I kept the family fed. It took 4 years after first application for ssd to be approved. In that time, I had to sell almost everything I had amassed through my life just to keep power and water. My wife of 19 years left because of the struggles. Finally, after the 4 years, I was approved. Narcolepsy, with or without cataplexy is very debilitating, and should be considered for inclusion on the list of conditions that warrant disability status.REPORT COMMENTS
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No, CancelJun 26th, 2017Someone from Laurelville, OH signed.
Jun 11th, 2017Angela C. from Madison, OH writes:
I have taken meds for this condition for 23 years and now that I'm 35 I've started having SEVERE tooth decay that appears to be caused by these medications. In the last month I have lost (broken/crumbled) 5 teeth! Though the normal struggles of narcolepsy to maintain a "normal" life is hard enough now I live from moment to moment falling into bed at the end of each very unproductive day. As a mom of 2 kids and wife, I feel I can't contribute anything, as a wife or mom. Even now that both kids are in school I can't even get a part time job to help my husband who is stuck having to get up to keep me from falling in the night due to one of my medications, but also help me with all the household and business issues of the home in addition to the work he has to do to earn an income for our family to function. We don't make enough for me to pay medical bills but too much to get ssi/ssdi. I also don't qualify for ssd, even though I was diagnosed (and have the supporting documents saying so) when I was 14 because my mom wasn't able to get the gov't to recognize narcolepsy back when I was young. Having never been able to work, I am told I can't receive ssd. So now I'm hesitant to even smile due so many missing and rotting teeth, am constantly in pain from these rotting teeth I can't get medicaid to have removed or replaced, and have no hope for any one to care about my quality of life or ability to even reach a status quo to match the rest of society. Just a glimpse of my life with Narcolepsy. Thanks for listening and please consider including this Disorder on the List of those conditions that qualify for Disability.REPORT COMMENTS
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No, CancelMay 31st, 2017Someone from Davenport, IA signed.
May 31st, 2017Someone from Greenwood, AR signed.
May 31st, 2017Someone from Culver City, CA signed.
May 31st, 2017Brandi E. from Houston, TX signed.
May 30th, 2017Someone from Chicago, IL signed.
May 30th, 2017Someone from Kissimmee, FL signed.
May 8th, 2017Amy W. from Seattle, WA signed.
May 3rd, 2017Someone from Prince Frederick, MD signed.
Apr 8th, 2017Margaret W. from Haydenville, MA writes:
I have a PhD I cannot use because my narcolepsy has steadily worsened. One additional problem some of us experience is the drugs that allow us a moderate level functioning have side effects. For me, the 6 medications I need have disabling effect on my memory. I struggle to read and I am unable to lead a class discussion because my memory is so poor I can't hold a discussion's points in my head long enough. Please add Narcolepsy to the list of qualified conditions for disability considerations. Peg Whalen PhD MSWREPORT COMMENTS
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No, CancelMar 4th, 2017Kathleen C. from Ormond Beach, FL signed.
Feb 27th, 2017Someone from Columbus, OH writes:
I am 32yrs old who suffers from the invisible disease Narcolepsy. Is this something I chose to have...NO, am I a lazy person...NO!!! I have applied and applied to get SS for Narcolepsy and all I get is a paid postage denial letter each and Everytime. Support from my family is slim to none. I am for certain that when my name is brought up in conversation it is equivalent to lazy/no good/ depressed individual. This has got to be considered for one and all suffering from this terrible disease that not a one of us has ever asked to have. PLEASE PLEASE PLEASE HELP!!!!!REPORT COMMENTS
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No, CancelFeb 19th, 2017JimmiXzSw r. from Topeka, IL writes:
fa1Yhm http://www.FyLitCl7Pf7ojQdDUOLQOuaxTXbj5iNG.comREPORT COMMENTS
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