Wake Up Narcolepsy's mission is to: Provide funding to accelerate a cure for narcolepsy; Increase awareness of narcolepsy; Decrease time-lapse from symptom onset to proper diagnosis; Provide supportive resources for people with narcolepsy and their l... Read more
Provide funding to accelerate a cure for narcolepsy;
Increase awareness of narcolepsy;
Decrease time-lapse from symptom onset to proper diagnosis;
Provide supportive resources for people with narcolepsy and their loved ones.
Narcolepsy is a chronic sleep disorder which affects the brain’s inability to regulate sleep-wake cycles normally. Over 200,000 Americans and 3 million people worldwide have narcolepsy. It is estimated that 1 in 2,000 people are diagnosed with the disorder, but it is believed that narcolepsy is severely under-recognized or misdiagnosed and incidence rates could be significantly higher. In other countries, including Japan, the incidence rate is reported as 1 in 500. In the U.S., it is not uncommon for 6 or more years to pass between initial onset and proper diagnosis. Narcolepsy most often presents itself in childhood, adolescence, or young adulthood, and affects both males and females equally. Narcolepsy is not caused by mental illness or psychological problems. It is most likely affected by a number of genetic mutations and abnormalities that affect specific biologic factors in the brain, combined with an environmental trigger during the brain's development, such as a virus. Narcolepsy’s effect on quality of life compares to Parkinson’s disease and epilepsy, yet only 7% of Americans can accurately identify any symptoms of narcolepsy.
The four major symptoms associated with narcolepsy are:
Excessive daytime sleepiness (EDS) - episodes of overwhelming sleepiness experienced throughout the day, comparable to how one would feel after staying awake for 48-72 hours straight.
Cataplexy - about 60% of people with narcolepsy also experience cataplexy, the sudden episode of muscle weakness triggered by strong emotion, resulting in the inability to move while awake. The weakness may be a buckling in the knees, the head dropping, or jaw slackening. Often, emotions such as humor, elation, surprise, or anger trigger the weakness. In severe cases, an individual might fall down and become completely paralyzed for a few seconds to several minutes. Reflexes are abolished during the attack.
Hypnagogic and hypnopompic hallucinations - auditory, visual or tactile hallucinations are experienced while falling asleep or waking up. These vivid dream-like experiences can be very frightening, life-like and confused as reality.
Sleep paralysis - the inability to move upon falling asleep or waking up. The paralysis may last a few seconds to a few minutes during which time one is unable to move.
Wonderful opportunity to help out a fabulous and dedicated organization. It's been enjoyable and the director trained me and had me up and running quickly, she's also tremendously kind, appreciative and responds fast to questions and comments. So happy to be making a difference with them. Another great thing is how realistic they are about volunteer time. Its as flexible as you can get with no deadlines or minimum contributions required. You do the work when it's convenient for you!