For US Healthcare Professionals
IT TAKES
a provider who understands the full impact of NT1
TO SUPPORT PATIENTS LIKE ME
—JUSTICE, living with NT1
Individual experiences may vary.
The burden of narcolepsy type 1 can extend beyond excessive daytime sleepiness and cataplexy1
Narcolepsy type 1 (NT1) is a rare, chronic neurological condition characterized by excessive daytime sleepiness (EDS) and cataplexy.9 EDS is persistent sleepiness, tiredness, or fatigue that can return quickly after sleep or naps.1 Cataplexy, the sudden and temporary loss of muscle tone, differentiates NT1 from narcolepsy type 2 (NT2).1 The presentation of cataplexy varies, especially in children.1 Some people with NT2 may develop cataplexy later in their disease, all of which makes this symptom critical, but difficult, to identify.1,10
Although these hallmark symptoms are well known, people with NT1 may also experience sleep-related hallucinations, sleep paralysis, and disrupted nighttime sleep. Symptoms can affect patients during the day and through the night, and cumulatively can lead to a diminished quality of life.1 The scope and severity of NT1 symptoms can vary between patients.
NT1 symptoms may limit patients’ engagement in daily activities1
Even for patients who are working to manage their NT1, the symptoms can interfere at work, school, and social settings.1
80%
OF PATIENTS WITH NARCOLEPSY REPORTED THAT THEIR CONDITION EXTREMELY IMPACTED OR HAD A VERY SEVERE IMPACT ON DAILY LIFE11,*
~85%
OF PATIENTS WITH NARCOLEPSY SAID THAT THE CONDITION INTERFERED WITH THEIR SOCIAL LIFE, EVERYDAY CHORES, AND EXERCISE11,*
9X
MORE WORK TIME REPORTED AS MISSED BY PEOPLE WITH NARCOLEPSY TYPE 1 COMPARED TO THOSE WITHOUT NARCOLEPSY12,†
*Results from a 15-minute online survey conducted in February 2022 of 110 US adults with self-reported narcolepsy type 1 (NT1; n=53), narcolepsy type 2 (NT2; n=35), or narcolepsy of indeterminate type (n=22).11
†Cross-sectional study comparing the results of a semi-structured interview with 127 patients with NT1 to 131 people without symptoms of a sleep disorder.12
NT1 affects more than sleep and wakefulness. Learn more about the cause of NT16-8
The full breadth of symptoms can affect patients across a range of daily activities1,2,11,13
Cataplexy, a key symptom of NT1, may not always be obvious4,6,14
Cataplexy episodes can range in severity, frequency, and presentation and are rarely observed in the clinical environment. Partial cataplexy events can be difficult to recognize even by patients who, for example, may describe themselves as clumsy.14
Consider talking with your patients with NT1 about what triggers their cataplexy and what the signs are of a cataplexy event.
Presentation of cataplexy may precede or coincide with EDS, or it could develop 2 to 3 years later, making regular symptoms reassessment essential.15,16
Patients with NT1 are often also managing comorbid conditions1,17
Patients with NT1 often have comorbid sleep, cognitive, and psychiatric disorders. They are also at an increased risk for cardiovascular and metabolic conditions.1,17
~80%
OF PATIENTS WITH NARCOLEPSY REPORTED FEELING ISOLATED, DEPRESSED, OR ANXIOUS11,*
>50%
OF PATIENTS WITH NARCOLEPSY REPORTED TROUBLE WITH MEMORY OR CONCENTRATION11,*
*Results from a 15-minute online survey conducted in February 2022 of 110 US adults who self-reported narcolepsy type 1 (NT1; n=53), narcolepsy type 2 (NT2; n=35), or narcolepsy of indeterminate type (n=22).11
I talked to my doctor about all the challenges I was facing with my NT1—at work, at home, and even with my husband. I wanted to make sure she knew how much my NT1 symptoms were impacting my life.
—MACHEL, living with NT1
Some patients may hesitate to share their struggles with NT113
Patients with NT1 often feel misunderstood, and their journey can be long and frustrating due to overlapping or misdiagnosed symptoms.1
Listening closely, asking questions to unearth their daily experiences, and engaging in shared decision-making can help establish disease management goals and align on appropriate management tools.1
Nearly 70% of patients with NT1 or NT2 reported that their healthcare provider never asked them about the impact of narcolepsy on their social life.13,‡
‡Data from an online survey conducted in the United States in June 2020 of 254 people with NT1 (n=151) or NT2 (n=103) who were between 18 and 39 years old.13
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References
1. Krahn LE, Zee PC, Thorpy MJ. Current understanding of narcolepsy 1 and its comorbidities: what clinicians need to know. Adv Ther. 2022;39(1):221-243. doi:10.1007/s12325-021-01992-4 2. Maski K, Steinhart E, Williams D, et al. Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med. 2017;13(3):419-425. doi:10.5664/jcsm.6494 3. Maski K, Trotti LM, Kotagal S, et al. Treatment of central disorders of hypersomnolence: an American Academy of Sleep Medicine clinical practice guideline. J Clin Sleep Med. 2021;17(9):1881-1893. doi:10.5664/jcsm.9328 4. Scammell TE. Narcolepsy. N Engl J Med. 2015;373(27):2654-2662. doi:10.1056/NEJMra1500587 5. De Luca R, Nardone S, Grace KP, et al. Orexin neurons inhibit sleep to promote arousal. Nat Commun. 2022;13(1):4163. doi:10.1038/s41467-022-31591-y 6. Mahoney CE, Cogswell A, Koralnik IJ, Scammell TE. The neurobiological basis of narcolepsy. Nat Rev Neurosci. 2019;20(2):83-93. doi:10.1038/s41583-018-0097-x 7. Toor B, Ray LB, Pozzobon A, Fogel SM. Sleep, orexin and cognition. Front Neurol Neurosci. 2021;45:38-51. doi:10.1159/000514960 8. Sakurai T. The neural circuit of orexin (hypocretin): maintaining sleep and wakefulness. Nat Rev Neurosci. 2007;8(3):171-181. doi:10.1038/nrn2092 9. Lipford MC, Ip W, Awasthi S, et al. Demographic characteristics and comorbidities of patients with narcolepsy: a propensity-matched cohort study. Sleep Adv. 2024;5(1):zpae067. doi:10.1093/sleepadvances/zpae067 10. Szabo ST, Thorpy MJ, Mayer G, Peever JH, Kilduff TS. Neurobiological and immunogenetic aspects of narcolepsy: Implications for pharmacotherapy. Sleep Med Rev. 2019;43:23-36. doi:10.1016/j.smrv.2018.09.006 11. Ortiz LE, Morse AM, Krahn L, et al. A survey of people living with narcolepsy in the USA: path to diagnosis, quality of life, and treatment landscape from the patient’s perspective. CNS Drugs. 2025;39(suppl 1):S23-S36. doi:10.1007/s40263-024-01142-8 12. Bassi C, Biscarini F, Zenesini C, et al. Work productivity and activity impairment in patients with narcolepsy type 1. J Sleep Res. 2024;33(3):e14087. doi:10.1111/jsr.14087 13. Davidson RD, Biddle K, Nassan M, Scammell TE, Zhou ES. The impact of narcolepsy on social relationships in young adults. J Clin Sleep Med. 2022;18(12):2751-2761. doi:10.5664/jcsm.10212 14. Quaedackers L, Pillen S, Overeem S. Recognizing the symptom spectrum of narcolepsy to improve timely diagnosis: a narrative review. Nat Sci Sleep. 2021;13:1083-1096. doi:10.2147/NSS.S278046 15. Bassetti CLA, Adamantidis A, Burdakov D, et al. Narcolepsy-clinical spectrum, aetiopathophysiology, diagnosis and treatment. Nat Rev Neurol. 2019;15(9):519-539. doi:10.1038/s41582-019-0226-9 16. Luca G, Haba-Rubio J, Dauvilliers Y, et al. Clinical, polysomnographic and genome-wide association analyses of narcolepsy with cataplexy: a European Narcolepsy Network study. J Sleep Res. 2013;22(5):482-495. doi:10.1111/jsr.12044 17. Black J, Reaven NL, Funk SE, et al. Medical comorbidity in narcolepsy: findings from the Burden of Narcolepsy Disease (BOND) study. Sleep Med. 2017;33:13-18. doi:10.1016/j.sleep.2016.04.004 18. Morse AM, Kim SY, Harris S, Gow M. Narcolepsy: beyond the classic pentad. CNS Drugs. 2025;39(suppl 1):S9-S22. doi:10.1007/s40263-024-01141-9 19. Yan Z, Li J, Yu Y, Qiu S, Wang B, Tang J. Comparative efficacy of new wake-promoting agents for narcolepsy–a network meta-analysis. BMC Neurol. 2025;25(1):466. doi:10.1186/s12883-025-04328-9 20. Dauvilliers Y, Mignot E, Del Río Villegas R, et al. Oral orexin receptor 2 agonist in narcolepsy type 1. N Engl J Med. 2023;389(4):309-321. doi:10.1056/NEJMoa2301940 21. Johns M. A new method for measuring daytime sleepiness: the Epworth Sleepiness Scale. Sleep. 1991;14(6):540-545. 22. Yu J, Zhou Y, Han X, Li Z, Chen F, Zhang L. Impaired vigilance in patients with narcolepsy type 1: a psychomotor vigilance task study. Nat Sci Sleep. 2024;16:2021-2028. doi:10.2147/NSS.S491893 23. Dauvilliers Y, Barateau L, Lopez R, et al. Narcolepsy Severity Scale: a reliable tool assessing symptom severity and consequences. Sleep. 2020;43(6):zsaa009. doi:10.1093/sleep/zsaa009 24. Brown RE, Basheer R, McKenna JT, Strecker RE, McCarley RW. Control of sleep and wakefulness. Physiol Rev. 2012;92(3):1087-1187. doi:10.1152/physrev.00032.2011
Having narcolepsy type 1 for me feels a lot like being a deflated basketball. When the ball is deflated, can’t really use it. Just like when you’re feeling tired and you need a nap. So I literally live my life by a clock. I’m constantly just calculating how much time do I have to allocate before I become tired? I cannot stress enough that giving myself enough cushion time for a nap is imperative for me, just to ensure that I can enjoy the things that I want to enjoy without a fear of experiencing an episode in public.
My name is Justice. I have narcolepsy type 1. I definitely grew up as an athletic family, but I started noticing at specific times in the day I would pass out like a light bulb and definitely because I was a high-functioning human, a high achiever, excelled athletically.
People just chalked it up as “Justice is tired, enjoys a good nap” having narcolepsy type 1. For me, I just kind of just lose all control, honestly. So one of my symptoms that I deal with, regardless of the medication, definitely it’s going to be kind of like this balance between the dream state and reality. I call it sleepy talk, where my brain literally thinks that I am still awake, but I am technically asleep.
So there are certain things I try to incorporate in my life to make my life even easier in dealing with having narcolepsy type 1. I call them little tricks. One of the things are sunglasses. If I do feel myself getting tired, I put my sunglasses on and nobody even knows that I’m asleep in public. People just don’t get it and they don’t understand.
And then you feel like a spectacle.
I try to avoid my body shutting down and passing out by taking a nap gap. It’s 11 to 1. I’m going to be shut down.
If you do have narcolepsy type 1 and you are a collegiate athlete, you can do it. Just because you have narcolepsy type 1 doesn’t mean you can’t play sports at a high level and things of that nature. My teammates and my coaches have been a great support system. I have been incredibly lucky to be surrounded by people who can understand, who can advocate.
I don’t have a fear of missing out, so I still will participate and go out. It’s important to surround yourself with people who can advocate and protect you in those situations if you do experience an episode. I preach to people constantly how important communication is, how important it is to find a great support system when you can, but also just being open and honest about what you need in those moments, and not being fearful that somebody is going to misunderstand you.