Man with narcolepsy type 1 splashing cold water on his face

IT TAKES

a wake-up call from a friend, ice-cold face wash, pregame power nap

TO LIVE WITH MY
NARCOLEPSY TYPE 1

—CASEY, living with NT1

Explore the burden of narcolepsy type 1 (NT1) through the lens of 3 individuals as they share
their compromises, concessions, and coping strategies living with this disease.

See their stories

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.

WHAT LIVING WITH NT1 CAN MEAN FOR YOUR PATIENTS

Narcolepsy type 1  may continue to disrupt many patients' quality of life, even with comprehensive management strategies1,2

Learn about life with NT1

My quality of life can be better. I still deal with some excessive daytime sleepiness. I still take naps almost daily.

—CASEY, living with NT1

Man with narcolepsy type 1 sitting in a chair and talking in a support group

MANAGING NT1

Care approaches address symptoms, but challenges can still remain1,3

Narcolepsy is a chronic, lifelong disease with no cure. Narcolepsy type 1 (NT1) care approaches focus on managing hallmark symptoms, such as excessive daytime sleepiness (EDS) and cataplexy. The overall impact, including the scope and severity of symptoms for patients with NT1, can vary. As some patients may continue to experience the burden of symptoms during the day and through the night, care approaches may include pharmacologic and nonpharmacologic modalities to help patients manage the remaining symptoms, including psychological and cognitive symptoms.1,3

Learn about management approaches

CAUSE OF NT1

Loss of orexin signaling contributes to the root cause of NT14

NT1 is a chronic neurological disorder thought to be caused by a loss of orexin (hypocretin) in the brain and subsequent disrupted downstream signaling. Orexin is a critical neurotransmitter released by orexinergic neurons in the lateral hypothalamus and is the key regulator of the sleep-wake cycle.1,4 Loss of orexin and its disrupted downstream neuronal signaling are also thought to contribute to cognitive and mood dysfunction, muscle atonia, and energy imbalance.5-7

Impaired orexin signaling may lead to the well-recognized symptoms of NT1, which can diminish patients' quality of life.1,7

Learn about orexin science

NT1 RESOURCES AND FAQs

Hear from people living with NT1, and get answers to frequently asked questions

Watch videos from people living with NT1 to learn about their journey and condition, and explore answers to frequently asked questions.

Videos and FAQs

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Get more information about life with NT1 and resources to support you and your patients.

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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. 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, Katagal 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

JUSTICE: I cannot stress enough, that giving myself enough cushion time for a nap is imperative. My name is Justice. I have narcolepsy type 1. To be a division 1 collegiate athlete, you need a great support system.

CASEY: My name is Casey. I have narcolepsy type 1. After I found my diagnosis, I went online and I started attending the support group meetings.

TARA: I'm Tara and I have narcolepsy type 1. I am a pediatric sleep coach. Just starting my own business.

JUSTICE: So one of my symptoms that I deal with, regardless of the medication, it's kind of like this balance between the dream state and reality. I call it sleepy talk.

CASEY: Even though I do take medication, I still experience symptoms of narcolepsy type 1. I still experience just that sleepiness feeling every day. It feels like somebody could tell me something and unless I have it written down, I'm not gonna remember what they said.

TARA: Symptoms I still experience, regardless of the medication, is cataplexy. It's usually when I'm stressed, my hands give out. Stress is a huge trigger for my symptoms.

CASEY: So orexin is in charge of your sleep-wake cycles. It's a neuropeptide that people with narcolepsy type 1 with cataplexy are deficient in.

TARA: Knowing about orexin, I mean, like knowing there's an underlying cause for NT1, I feel like, now, it isn't my fault. And it was not just in my head.

JUSTICE: 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 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.

CASEY: I'll take cold plunges and ice baths, cold water washing my face during the day. But if I feel a migraine coming on, that's usually my trigger and it tells me that I need to go take a nap.

TARA: I'm going to steal some of yours.

JOEY: I'm going to steal some of yours.

TARA: To have a successful date night, we have to eat earlier rather than later just because I get tired. I need someone who is very empathetic and so, like, having Joey. He's been great. It's really nice because I never really thought that I would get that.

JUSTICE: 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.

TARA: My life is going to be different than what I expected it to be, but I want to educate as much as possible, share my story, and talk about it as much as I can, because most people don't really know what it is. It's not talked about enough and I just want others to know they're not alone.

CASEY: Narcolepsy is incredibly difficult to live with. I was in a really deep, dark place for a long time, and taking the first step by going to the support group meetings was a huge step for me. It's helped me find a great sense of support. I can't imagine my life without it anymore.