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

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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.

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Public Comments (2,215)
Apr 8th, 2017
Margaret W. from Haydenville, MA writes:
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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 MSW
Mar 4th, 2017
Kathleen C. from Ormond Beach, FL signed.
Feb 27th, 2017
Someone from Columbus, OH writes:
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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!!!!!
Feb 19th, 2017
JimmiXzSw r. from Topeka, IL writes:
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Feb 8th, 2017
Ebony C. from Philadelphia, PA signed.
Jan 26th, 2017
Someone from Wyoming, MI writes:
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I feel lost and alone, imprisoned in a dream I can't wake from.
Jan 26th, 2017
Someone from Wyoming, MI writes:
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How would YOU lIKe it if there was something bwyond your control that happened to you and you are left feeling helpless!?
Jan 23rd, 2017
Someone from Ball Ground, GA writes:
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My Child suffers greatly from this disorder. He has sudden falls, cannot get his driver's license because he may wreck and hurt himself or someone else. He has applied for various jobs, and when he tells people he has the disorder, Narcolepsy with Cataplexy, they will not hire him.
Jan 22nd, 2017
Georgina S. from Menlo Park, CA signed.
Jan 17th, 2017
Someone from Dallas, GA signed.