Woman with narcolepsy type 1 fixing her collar in a bathroom mirror

IT TAKES

alarms to set alarms, a nap to recharge, sleep episode-safe friends

TO LIVE WITH MY
NARCOLEPSY TYPE 1

—JUSTICE, LIVING WITH NT1

The patients featured on this website are paid speakers for Takeda and/or have been compensated for their participation. Their stories reflect individual experiences, which 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.2 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.1,3

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.

Woman with narcolepsy type 1 sleeping in bed

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 NT1 REPORTED THAT THEIR CONDITION EXTREMELY IMPACTED OR HAD A VERY SEVERE IMPACT ON DAILY LIFE4*

~85%

OF PATIENTS WITH NARCOLEPSY (NT1 OR NT2) SAID THAT THE CONDITION INTERFERED WITH THEIR SOCIAL LIFE, EVERYDAY CHORES, AND EXERCISE4*

9X

MORE WORK TIME REPORTED AS MISSED BY PEOPLE WITH NARCOLEPSY TYPE 1 COMPARED TO THOSE WITHOUT NT15†

*Results from a 15-minute online survey conducted in February 2022 of 88 US adults with NT1 (n=53) or NT2 (n=35).4

†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.5

Man with narcolepsy type 1 laying down on a blanket outdoors and throwing a baseball into the air

The full breadth of symptoms can affect patients across a range of daily activities1,4,6,7

Feeling well-rested and refreshed

A tired person feeling moody icon

Building or sustaining relationships

A relationship icon

Enjoying everyday activities, like exercise

A person riding a bicycle icon

Managing everyday responsibilities, like parenting, cooking, cleaning, and self-care

A parent holding their child icon

Overcoming the cognitive impairment that makes work or school difficult

A person standing next to a flag on a platform with their arms up icon

Patients with NT1 are often also managing comorbid conditions1

Patients with NT1 often have comorbid sleep, cognitive, and psychiatric disorders. They are also at an increased risk for cardiovascular and metabolic conditions.1

~80%

OF PATIENTS WITH NT1 OR NT2 REPORTED FEELING ISOLATED, DEPRESSED, OR ANXIOUS4*

>50%

OF PATIENTS WITH NT1 OR NT2 REPORTED TROUBLE WITH MEMORY OR CONCENTRATION4*

*Results from a 15-minute online survey conducted in February 2022 of 88 US adults with NT1 (n=53) or NT2 (n=35).4

Woman with narcolepsy type 1 sitting on the floor and hand knitting

Some patients may hesitate to share their struggles with NT17

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

7 out of 10 patients icon

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.7‡

‡Data from an online survey conducted in the US in June 2020 of 254 people with NT1 (n=151) or NT2 (n=103) who were between 18 and 39 years old.7

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References

1. Krahn LE, Zee PE, 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. 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 3. Szabo ST, Thorpy MJ, Mayer G, Peever JH, Kilduff TS. Neurobiological and immunogenic aspects of narcolepsy: implications in pharmacotherapy. Sleep Med Rev. 2019;43:23-36. doi:10.1016/j.smrv.2018.09.006 4. 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 5. Bassi C, Biscarini F, Zenesini C, et al. Work productivity and activity impairment in patients with narcolepsy type 1. J Sleep Res. 2024;33:e14087. doi:10.1111/jsr.14087 6. 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 7. 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(2):2751-2761. doi:10.5664/jcsm.10212