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

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.

(Photo: http://photos.prnewswire.com/prnh/20130919/DC82957-INFO)

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 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 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 www.UniteNarcolepsy.org.


'/>"/>
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:
*Name:
*Comment:
*Email:
(Date:2/10/2016)... --> --> This press release is ... --> Japan .  --> A separate press release has ... Shire continues to strengthen its presence ... Shire continues to strengthen its presence in ... continues to strengthen its presence in ...
(Date:2/10/2016)... , Feb. 10, 2016  Resolve Therapeutics, ... transformative new approaches to the treatment of lupus ... of a multiple ascending dose study in patients ... compound RSLV-132. --> ... placebo-controlled multiple ascending dose study of RSLV-132 in ...
(Date:2/10/2016)... YORK , Feb. 10, 2016 Immune ... biopharmaceutical company, announced today that it has filed a ... Leukemia and other cancers. --> ... treating cancer by administration of Ceplene (histamine dihydrochloride) in ... provides methods of predicting the efficacy of Ceplene and ...
Breaking Medicine Technology:
(Date:2/10/2016)... ... February 10, 2016 , ... The 9th annual ... Imaging Congress (WMIC), will be held in New York City, NY on September ... Therapy.” The congress will highlight and emphasize how imaging reveals a greater understanding ...
(Date:2/10/2016)... ... ... LaserShip, a regional parcel carrier that services the eastern U.S., donated and ... in order to aid in the Flint water crisis. In 2014, LaserShip acquired Prestige ... Clio, only 15 miles away from Flint. , “We have deep roots in the ...
(Date:2/10/2016)... Fort Walton Beach, Florida (PRWEB) , ... February ... ... that the innovative weather-forecasting company is unveiling its revolutionary new 2.0 version at ... new platform, MetLoop has “put the power of the world's most advanced weather ...
(Date:2/10/2016)... ... February 10, 2016 , ... Intermedix ... of Emergency Medicine , an emergency medicine professional association, to support the organization's ... , The American Academy of Emergency Medicine, or AAEM, seeks to empower emergency ...
(Date:2/10/2016)... ... 10, 2016 , ... Emergency rooms provide emergency care to stabilize critical health ... patients with dental emergencies at risk of losing a tooth or their smiles. Dr. ... , Common dental emergencies include:, , Avulsed or knocked-out teeth ...
Breaking Medicine News(10 mins):