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Narcolepsy Patient Community Prepares to Share Life Impacts, Treatment Perspectives with FDA Regulators
Date:9/19/2013

ge their condition. Fewer than 8% reported that they currently pursue no form of treatment for the condition.
  • Even with available treatments, the impact of narcolepsy on daily life is profound.  83% percent report not being able to perform as they wish at work or in school. 76% indicate that they have difficulty interacting with family or friends, and 70% can't get through the day without falling asleep.
  • Nearly 51% of survey respondents reported that it took 6 years or longer to get properly diagnosed.
  • A more detailed summary of survey responses including a sampling of respondents' own comments can be read at http://www.unitenarcolepsy.org/wp-content/uploads/Interim-Survey-Analysis-v1.pdf.

    Monica Gow, Wake Up Narcolepsy co-founder and executive director, is gratified by the community's candor in sharing their experiences and perspectives. "The thousands of comments submitted tell a heart-breaking story of dreams deferred, career and educational plans put on hold, independence lost, and families torn apart," she said. "Simple things we take for granted are lost to people combating narcolepsy."

    Life with a narcolepsy, a disease that is often the butt of unkind jokes, can be very isolating. Unite Narcolepsy organizers reached across the community to educate patients about this unique invitation from the FDA. Julie Flygare, J.D., a popular narcolepsy blogger and book author, helped launch and sustain the effort via social media. Jazz Pharmaceuticals, Inc., will make an unrestricted grant to Wake Up Narcolepsy in support of the Unite Narcolepsy community-building initiative.

    Gow, Flygare, and other representatives from the Unite Narcolepsy initiative will attend the FDA meeting, which will also be webcast live; and hundreds of people have registered to partic
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    SOURCE Wake Up Narcolepsy
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