Results of a three-part survey of those living with narcolepsy (n=200), treating physicians (n=251), and the general public (n=1,203) spotlight the impact of this rare, chronic neurologic disorder on daily life. The Know Narcolepsy survey, conducted by Versta Research among a total of 1,654 respondents on behalf of Harmony Biosciences LLC, in collaboration with patient advocacy organization, Narcolepsy Network, highlighted that narcolepsy is life-changing for the majority (86%, n=172) of those surveyed living with the disorder. However, 78% (n=938) of the general public surveyed agreed they have no idea what it must be like to live with narcolepsy.
Among people living with narcolepsy surveyed (n=200):
- Over two-thirds (68%, n=136) agreed they never feel like a normal person because of the disorder and 80% (n=160) said living with narcolepsy is a daily struggle.
- More than half (54%, n=108) agreed narcolepsy controls their lives.
- 76% (n=152) agreed the disorder has affected important moments in their lives.
- More than a third (37%, n=74) reported having failed a class at school or having withdrawn entirely because of symptoms of narcolepsy.
- One in four (25%, n=50) reported they have been fired from a job or demoted because of problems related to narcolepsy, and among those currently employed, a majority (60%, n=55) agreed they were worried about losing their jobs because of the disorder.
“Narcolepsy is a serious, neurological disorder that impacts many aspects of life, including family, school, careers, and relationships, if not appropriately managed,” says Michael Thorpy, MD, director of the Sleep-Wake Disorders Center at the Montefiore Medical Center in New York, in a release. “I’m hopeful that the survey results will encourage much-needed dialogue in the exam room, within the community and among the general public to help increase awareness and understanding, and to further advance patient care.”
The survey also underscored the complexity of the disorder and challenges in symptom recognition and diagnosis. According to people living with narcolepsy surveyed:
- They may spend years living with symptoms, and the journey to diagnosis can be long and complex. In fact, on average, it took 6+ years to be diagnosed following the onset of their symptoms.
- Four out of 10 (38%, n=76) were initially misdiagnosed with another condition, most commonly (25%, n=50) with depression.
- According to literature, about two-thirds of people living with narcolepsy have cataplexy, a sudden and brief loss of muscle strength or tone brought on by emotions or situations. Yet, only a quarter of those living with narcolepsy surveyed (26%, n=52) reported having cataplexy to their physician, and over half (54%, n=108) reported knowing little to nothing about cataplexy.
- Nearly all (94%, n=188) agreed there is more to be done to improve communication and further education.
“The mischaracterization of narcolepsy in our culture fuels the stigma associated with the disorder, which is detrimental to the narcolepsy community and further isolates people living with narcolepsy,” says Eveline Honig, MD, MPH, executive director of Narcolepsy Network, a national patient support organization dedicated to education and support for the community. “These survey results shed light on the issue and help advance awareness, compassion and understanding toward those living with narcolepsy.”
Even with treatment, people living with narcolepsy continue to feel the impact of their symptoms. Nearly all (94%, n=188) of people living with narcolepsy surveyed believed there is a need for more treatment options.
When asked about their biggest frustrations with medications for narcolepsy symptoms, 56% (n=112) said side effects, 46% (n=92) said loss of efficacy over time, 20% (n=40) said inconvenient to take, and 17% (n=34) said worries about abuse.
One in eight (12%, n=24) agreed their narcolepsy symptoms are completely or mostly under control.
Consistent with responses from people living with narcolepsy, nearly all of physicians surveyed (94%, n=235) agreed there is a need for new and better treatment options, and more than nine out of ten (95%, n=238) reported that medications offering new mechanisms of action would be valuable to them.
There is also a need for additional treatment options for those with diagnosed with multiple sleep disorders, eg narcolepsy, sleep apnea, rls…
The medical community needs more education. When I have cataplexy with people who don’t understand it, they tend to call 911. Usually by the time EMT arrives, I am up and fine. Sometimes I am still down. Not one EMT that I have encountered knew what cataplexy was. Each one wanted to transport me to hospital. When I told my eye doctor that I had narcolepsy, his comment was “Oh you like to sleep.”! How can we expect teachers, police, friends, etc to understand this when the medical community is so ill informed.
I have had narcolepsy since high school. I am on the verge of being fired from my job due to my inability to wake up on time for work. It’s ruining my life.
I have been struggling with the symptoms of narcolepsy my whole life. Even though my mom was always telling my doctor and I was telling my doctors as an adult that I was extremely tired all the time none of my doctors thought to do a sleep study. I was ridiculed by my teachers in high school for falling asleep in class and struggled in class as am adult as well. It’s pretty embarrassing when you’re 45 years old and your teacher is constantly saying “Yvonne, wake up”!
I realized that I may have narcolepsy last year while reading an article about narcolepsy. Before reading the article I thought that Narcolepsy was CATAPLEXY. I think most people think the same thing including primary care doctors. Since reading the article I had a sleep study that revealed restless leg syndrome which caused my legs to move on an average of 55 times every hour. Followed by an MSLT where I feel asleep within 3 minutes for every nap and when right into REM.
My quality of life has improved so much since beginning medication for RLS and Narcolepsy without Cataplexy. I’m taking a class in February and I’m looking forward to seeing the difference in my ability to stay awake and retain the lessons.
My hope is that we can educate the general public more so others will not have to suffer for so long before being diagnosed.
Thank you for all that you do.