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:5/4/2017)... 2017  A new tight-tolerance microextrusion medical tubing ... materials, is being launched by Natvar, a Tekni-Plex ... in recent years to service a wide variety ... More expensive materials such as glass and fluoropolymers ... to their ability to consistently hold tolerances. This ...
(Date:5/3/2017)... Calif. , May 3, 2017 ... of any hospital or healthcare facility. Commonly referred ... room is equipped with diagnostic imaging technology to ... of the heart. In these spaces, a team ... catheterization, balloon angioplasty, percutaneous coronary intervention, congenital heart ...
(Date:5/3/2017)... , May 3, 2017  Getinge, a ... contribute to quality enhancement and cost efficiency within ... a study of contemporary practice demonstrating that intra-aortic ... therapy for critically ill patients. The single-center, retrospective, ... newer large volume MEGA ® 50cc intra-aortic ...
Breaking Medicine Technology:
(Date:5/21/2017)... ... 20, 2017 , ... Pixel Film Studios presents a set ... Final Cut Pro X. The business-oriented elements and dignified animations are designed to ... will deliver a professional and distinguished look to any multi-line text animation within ...
(Date:5/21/2017)... ... May 21, 2017 , ... For the past ... group of scholars, policymakers, and activists wanting to address equity issues in breastfeeding, ... the third book from a recent series of from this conference. , ...
(Date:5/21/2017)... , ... May 21, 2017 , ... For more than ... cover a wide range of knives and swords, from functional to fantasy. United Cutlery ... goods with sleek, modern designs that defy tradition. , Offering a range of weapons ...
(Date:5/21/2017)... (PRWEB) , ... May 21, 2017 , ... ... if it's been longer than six months since you've seen a dentist, it's ... twice per year and getting x-rays once per year. , Dental checkups are ...
(Date:5/19/2017)... ... May 19, 2017 , ... A leader in ... Charlotte recently began recruitment efforts for the inaugural cohort of its online ... knowledge and expertise to approach and address the unique nuances healthcare organizations face ...
Breaking Medicine News(10 mins):