Add Narcolepsy as a qualifying condition to The Social Security Blue Book

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Please sign this petition to list Narcolepsy as a qualified disabling condition in the Social Security Blue Book. Why should Narcolepsy be listed among the list of conditions in the Social Security Blue Book? Narcolepsy is a condition that adversely affects functions of everyday life. It is very misunderstood but 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. 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 functioning as well. Many PWN struggle daily putting their health, mental state and even lives at risk at times. Many go from job to job because it is impossible to maintain stable employment with any given employer for lengthy periods. Because many persons with Narcolepsy, or PWN as it is often abbreviated, have difficulty maintaining employment for long periods, it is nearly impossible to advance, maintain seniority or keep a job long enough to manage a decent pay raise to reach a livable salary. 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. 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. Insufficient or unavailable orexinergic signaling results in the dysregulation of a wide range of processes throughout the body such as the autonomic and sympathetic nervous systems (breathing, blood pressure and heart rate regulation, intestinal motility, homeostasis, etc.) executive function and cognition, olfactory perception, motivation, arousal and feeding, sex drive, psychological processes such as mood, and of course the sleep wake cycle, to name just a few. Narcolepsy used to be known as a sleep disorder because the night time sleep of narcoleptics is interrupted, resulting in a lack of restful or restorative sleep. However, narcolepsy was recently reclassified as neurological disorder, with Type 1 narcolepsy (with cataplexy) occurring in 65-70% of patients. Most of the remaining sufferers fall into the category of Type 2 narcolepsy (without cataplexy). The ADA, or Americans With Disabilities Act, defines a person with a disability as “a person who has a physical or mental impairment that substantially limits one or more major life activity." Narcolepsy is a rare, chronic illness that substantially impacts multiple life activities. It is a neurological sleep disorder where the brain is no longer able to properly control the sleep/wake cycle. Because the brain does not follow the normal sleep cycle, the physical and cognitive abilities of a person with Narcolepsy are continuously impaired. In order for a person without Narcolepsy to experience an "everyday tired" for someone with Narcolepsy, they would literally have to stay awake 48 to 72 hours. That is 48 to 72 hours with no sleep. Sleep is the most important function of the body. A person can survive longer without food than they can without sleep. Sleep is necessary for the body to restore and heal itself. Sleep is necessary to fight off disease. Anyone who has ever pulled an all-nighter or two for a test or to finish a project has experienced that slow, groggy feeling you get when you haven't had enough sleep. Anyone who has had to pull over to rest during a long distance drive has experienced the slowing of reflexes that can't be avoided when you are extremely sleepy. People who suffer from Narcolepsy are often at risk of falling asleep at inopportune and even dangerous times. Many suffer from Cataplexy (sudden muscle weakness), Hypnagogic & Hypnopompic Hallucinations (upon falling asleep and upon waking), and Sleep Paralysis; in addition to debilitating Excessive Daytime Sleepiness. Because it is a neurological sleep disorder, the effects are both physical and cognitive. Despite all of these substantial limitations on major life activities, Narcolepsy is not specifically listed in the Social Security Blue Book as a qualified disability. The Blue Book is the Social Security Administration's complete listing of impairments used to determine disability benefits. There are many people with Narcolepsy who are struggling, going from job to job trying to survive. They are putting their health and sometimes their lives at risk, forcing themselves to work beyond limitations. These are everyday tasks most take for granted. There is a lot of misunderstanding and misinformation regarding Narcolepsy. I am listing some pertinent facts as to illustrate the effects of Narcolepsy. Narcolepsy is a lifelong chronic illness which has no cure Although there are treatments to help aid with the symptoms of Narcolepsy, there is no one proven method. It may take a person with Narcolepsy as much as several years to find the right combination of medications in order to function at just a partially normal level. It can take an average of 10-15 years for a PWN (Person with Narcolepsy) to be correctly diagnosed. Narcolepsy can impact nearly every aspect of your life. It is dangerous because you can have excessive sleepiness or a sleep attack at any time of the day, in the middle of any activity including eating, walking or driving. Operating a vehicle with untreated narcolepsy can be very dangerous and some states even have laws against it Cataplexy is a sudden and transient episode of muscle weakness accompanied by full conscious awareness, typically triggered by emotions. Laughing, crying, terror, stress, and anxiety are a few examples of such emotions. Many people believe because they are frequently tired, it is the same as Narcolepsy. This is not the case. PWN are pathologically "sleepy", not just tired. This means that, while a person with Narcolepsy does not necessarily sleep more or less than a person without Narcolepsy, they will experience an almost, if not completely, uncontrollable need to fall asleep most times. For more information on Narcolepsy here are some websites: www.moreawake.com www.narcolepsynetwork.org http://www.ninds.nih.gov/disorders/narcolepsy/narcolepsy.htm


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