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Living with narcolepsy: symptoms and misconceptions

Published: Sep. 14, 2021 at 11:48 AM CDT
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(WSAW) - Narcolepsy is a neurological disorder that affects the way the brain controls sleep-wake cycles and can cause symptoms such as excessive daytime sleepiness or cataplexy which is sudden muscle weakness, vivid hallucinations, disrupted nighttime sleep and sleep paralysis while waking up or falling asleep. It is estimated to be severely underdiagnosed and typically goes undetected for years after symptoms develop.

Confusion, stereotypes and misinformation about this sleep disorder persist. This can lead to the long time to diagnosis and prevent people from reaching out to a healthcare professional to learn more about their symptoms and resources that can help. It takes an average of approximately 10 years from symptom onset for people living with narcolepsy to receive a diagnosis, with more than 50% of people living with narcolepsy initially receiving a misdiagnosis.

In a 2018 survey of U.S. adults, 78% of the general public surveyed agreed that they have no idea what it is like to live with narcolepsy.

World Narcolepsy Day on September 22 is a day dedicated to raising awareness of narcolepsy – an often overlooked, yet life-altering neurological disorder – uniting the narcolepsy community to inspire action, increase public knowledge and elevate the voices of the approximately 165,000 people living with narcolepsy in the United States alone.

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