Navigation Links
Narcolepsy Patient Community Prepares to Share Life Impacts, Treatment Perspectives with FDA Regulators

WORCESTER, Mass., Sept. 19, 2013 /PRNewswire-USNewswire/ -- On September 24, 2013, patients with narcolepsy and other stakeholders will gather at the Food & Drug Administration to provide direct input on drug development issues affecting nearly 200,000 Americans with narcolepsy. The meeting, fourth in a series of 20 mandated under a 2012 law, will be the first session dedicated to a disease classified as rare.


To prepare the patient community for this opportunity to speak directly with FDA regulators, Wake Up Narcolepsy, Inc., launched Unite Narcolepsy, a special patient education and engagement initiative. A survey based on questions about narcolepsy posed by FDA has attracted more than 1,330 responses, including more than 1,000 from people diagnosed with narcolepsy by a physician. Key survey findings include:

  • Cataplexy, a striking and sudden episode of muscle weakness often triggered by strong emotion, was reported by 65% of respondents. The three symptoms rated as having the most significant impact on patients' lives were excessive daytime sleepiness (77%); difficulty thinking, remembering, concentrating, or paying attention (50%); and general fatigue/never feeling rested (45%).
  • Nearly 95% of survey respondents reported having been prescribed one or more of the four medications approved by FDA for treatment of narcolepsy or its key symptoms (Adderall, Nuvigil, Provigil, and XYREM® [sodium oxybate] oral solution). 70% use other prescription medications (including stimulants, anticataplectics, and hypnotics/sedatives), and 80% use other therapies (such as lifestyle modifications, nutritional supplements, and diet) to help manage 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

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 participate in person and online. FDA staff members have called the strong response "unprecedented" for this meeting series.

Narcolepsy is a neurological sleep disorder that affects some 200,000 Americans and 3 million adults and children worldwide. Wake Up Narcolepsy is a nonprofit organization working to speed diagnosis and help in the search for a cure. To learn more about narcolepsy, other interim results of the patient survey, and the upcoming FDA meeting, please visit

SOURCE Wake Up Narcolepsy
Copyright©2012 PR Newswire.
All rights reserved

Related medicine technology :

1. "AWAKEN" Survey Finds Only 50 Percent of Americans Understand Significant Health Impact of Narcolepsy, and Many Physicians Not Comfortable Diagnosing the Sleep Disorder
2. Study Showed Patients Treated With The miraDry© System Experienced 82 Percent Sweat Reduction On Average
3. Argos Therapeutics Secures $25 million Series D Financing to Commence Phase 3 ADAPT Study in Patients with Metastatic Renal Cell Carcinoma (mRCC) in Mid-2012
4. Watching, Reading and Listening: A New Way to Interact with Patient Information
5. Phreesia identifies over 26% of patients who require additional autism evaluation
6. Anthera Announces the Completion of Patient Dosing in Phase 2b PEARL-SC Study
7. Almost 50 Percent of the Glaucoma Patient Population Remains Untreated, Signifying a Vast Market for Glaucoma Pharmaceuticals, Finds Frost & Sullivan
8. Onyx Pharmaceuticals Announces FDA Advisory Committee to Review Carfilzomib for the Treatment of Patients with Relapsed and Refractory Multiple Myeloma
9. New post-hoc analyses examined Neupro® effects on pain, depressed mood, apathy and fatigue in patients with Parkinsons disease
10. Patient Advocate Foundation Announces New Co-Pay Relief (CPR) Offerings for Patients Facing Health Issues Due to Electrolyte Imbalance
11. Quest Diagnostics Establishes Unique Healthcare Identifier to Improve Access to Vital Patient Health Information; 80 Million Patient IDs Created to Date
Post Your Comments:
(Date:11/26/2015)... , November 26, 2015 /PRNewswire/ ... --> adds "Global ... and "Investigation Report on China Repaglinide ... 2021 forecasts data and information to ... . --> ...
(Date:11/26/2015)... , Nov. 26, 2015 Research and ... of the "2016 Future Horizons and Growth ... Market: Supplier Shares, Country Segment Forecasts, Competitive Intelligence, ... --> --> ... of the Italian therapeutic drug monitoring market, including ...
(Date:11/26/2015)... November 26, 2015 ... addition of the  "2016 Future Horizons ... Cell Surface Marker Testing Market: Supplier ... to their offering.  --> ... of the  "2016 Future Horizons and ...
Breaking Medicine Technology:
(Date:11/30/2015)... ... November 30, 2015 , ... Insightra Medical, Inc. and Novus ... technology for soft tissue repair in the US via Insightra’s national direct sales ... mesh intended to support and reinforce soft tissue for 6-9 months before absorbing ...
(Date:11/30/2015)... ... 30, 2015 , ... SIMmersion’s ability to present dynamic scenarios ... of the future. To reach an audience of key visionaries and reformers in ... Chicago, organized by the American Medical Association. , AMA President Steven Stack, ...
(Date:11/30/2015)... ... November 30, 2015 , ... ... enterprise Time and Attendance/Workforce Management cloud-based solutions, announced today that it has ... competencies in the Application Development, demonstrating a “best-in-class” ability and commitment to ...
(Date:11/30/2015)... November 30, 2015 (PRWEB) , ... ... ... and Winscribe are pleased to announce their strategic partnership at the Radiological ... consultants, SpeechCheck, Inc., and Winscribe, global providers of cutting-edge dictation and speech-enabled ...
(Date:11/30/2015)... ... 30, 2015 , ... World Patent Marketing , a ... household invention that provides an economical and easy way of gaining customized curtains. ... at 2.6%," says Scott Cooper, CEO and Creative Director of World Patent Marketing. ...
Breaking Medicine News(10 mins):