In just six week, the Unite Narcolepsy’s patient survey has collected over 1,350 responses, including over 1,000 responses directly from patients diagnosed with narcolepsy. The survey results paint a powerful picture of the challenges facing the narcolepsy community – including extensive delays in diagnosis and many unmet medical needs. The Interim Survey Analysis will be shared at FDA’s Narcolepsy Patient Focused Meeting next Tuesday, Sept. 24, 2013 in Silver Spring, MD. [View/Download Results Here.]
Key Results 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). 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% 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
**I highly recommend reading the full report here – it left me in tears.**
The survey remains open til Nov. 11, 2013 – and final results will be reported to the FDA through the docket system on November 25, 2013. Start survey here: https://www.surveymonkey.com/s/unitenarcolepsy.
Thank you for participating and making this survey such a powerful tool to help raise awareness about narcolepsy at FDA and in many other settings!