Add Narcolepsy/Idiopathic Hypersomnia as a qualified disabling condition in the Social Security Blue Book.

Messages Sent So Far
Why should Narcolepsy be listed among the list of conditions for disability? Narcolepsy is a condition that adversely affects functions of everyday life. It is very misunderstood and it's effects are far reaching. It is incurable and it takes many Narcoleptics years before they can find the right combination of medications to become semi-functional. It is physically and mentally debilitating.

Few people know what narcolepsy is. Of those few, many see it as just a sleep disorder in which the person with the condition sleeps more than the average person. This is incorrect. Narcolepsy impacts other important physiological functions. A lot of doctors even lack education and/or experience on the subject, sometimes leading to disastrous results.

What is Narcolepsy? In a healthy brain there is a small population of specialized cells in the hypothalamus called orexin neurons. These orexin neurons produce a neuropeptide called orexin. Orexin acts as a neurotransmitter. It's primary function appears to be arousal (regulation of the sleep/wake cycle), food seeking and appetite. When, through a process which is not yet confirmed but is suspected to be autoimmune in nature these orexin neurons are either completely or partially killed off, orexin becomes unavailable or its availability becomes severely reduced. The result is that the transmission of neural messages done by orexin, called orexinergic signaling, is unavailable or drastically limited. When that happens, several very clearly identifiable physical symptoms become manifest in a person. That group of symptoms is what we call narcolepsy. Orexin directly regulates or is involved in the regulation of serotonin, adrenaline, histamine, dopamine, acetylcholine, norepinephrine, GABA and glutamine, among others. When there isn't enough orexin these other systems become dysregulated and fail, causing the further dysregulation of other systems. These are what are known as cascading failures.

One of the most important points to understand about narcolepsy is one that escapes most people, including many physicians. It is this: when orexinergic signaling is absent or insufficient, other things go wrong in the body that manifest themselves in ways that appear to be unrelated to narcolepsy. The missing Orexins, now believed to be one of the main precursors for Narcolepsy, not only affect the sleep /wake cycle, but things like metabolism, gastrointestinal functioning and cognitive/executive functioning as well.

Persons with Narcolepsy commonly struggle with the most basic aspects of human functioning, often putting their physical health, mental health, and even their lives at risk to accomplish what they need to do to survive.

Many go from job to job due to repeated tardiness, impeded decision making, and poor productivity so they have no chance to advance, maintain seniority, or earn decent pay raises to reach a livable salary, and live in constant fear of homelessness. Many others simply are not able to work full time in any capacity, and the fear of homelessness becomes very real when they are unable to get SSDI.

Please, consider the devastating effects of this illness to help people with narcolepsy get the assistance we so desperately need.

Post Public Comments

Public Comments (2,226)
Jun 28th, 2017
Joe M. from Charlotte, NC writes:
Quotation mark icon
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.
Jun 26th, 2017
Someone from Laurelville, OH signed.
Jun 11th, 2017
Angela C. from Madison, OH writes:
Quotation mark icon
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.
May 31st, 2017
Someone from Davenport, IA signed.
May 31st, 2017
Someone from Greenwood, AR signed.
May 31st, 2017
Someone from Culver City, CA signed.
May 31st, 2017
Brandi E. from Houston, TX signed.
May 30th, 2017
Someone from Chicago, IL signed.
May 30th, 2017
Someone from Kissimmee, FL signed.
May 8th, 2017
Amy W. from Seattle, WA signed.
(c) Petition2Congress, all rights reserved. For support: email or call (202) 600-8357