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.

Watch Casey's story

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

Get answers to frequently asked questions

Explore answers to frequently asked questions (FAQs) with the latest information about NT1.

Read answers to FAQs about NT1

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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

I really beat myself up over dropping my phones and breaking them. So I call it the cataplexy tax. Every cell phone I've ever owned, I have dropped. Narcolepsy type one is a rare neurological disorder that affects your wake and sleep cycles. My narcolepsy type one comes with something called brain fog. The way I would describe it would be like a hazy feeling.

Not feeling totally awake. Not feeling 100% aware. Kind of living in a daze. My name is Casey. I have narcolepsy type one. If I had to guess when my symptoms of narcolepsy type one started, I would say I was probably 13 or 14. I was always tired or sleepy during the day, but I was always told it was just contributed to me being a teenager.

I was diagnosed when I was 17 years old, but I was never told that I was diagnosed. I finally found out about it when I was 32. I was putting together a medical record book for my doctors. I stumbled across the word narcolepsy. That was a pretty big surprise. At least now I had a word to describe my feelings.

So, orexin is in charge of your sleep wake cycles. It's a neuropeptide. That's what people with narcolepsy type one with cataplexy are deficient in. Even though I do take medications, I still experience excessive daytime sleepiness where most days I have to take a nap at some point, 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.

Having a visual cue of being able to see what I need to do so I can stay on track. I also take cold plunges and ice baths, cold water washing my face during the day to kind of help wake me up. 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.

I was accused of being an alcoholic. That's why they thought I could not wake up in the mornings. I felt a lot of shame from all the jobs that I had lost. My family shamed me about it. Everybody kept telling me, why can't you just wake up in the mornings? But nobody actually knew how hard I was trying. After I found my diagnosis of narcolepsy type one with cataplexy, I went online and I had started attending these support group meetings.

It's good to see everybody again this week. I was listening to these stories and it felt like they were talking about my life. It really gave me a sense of belonging, and It finally felt like I found my community and a place that I actually belonged in. Being on my feet and being able to walk around and be outside and get some fresh air and the blood flowing always usually helps.

Facilitating group meetings makes me very happy when people find our meetings, because it feels like we're adding another family member. Because with narcolepsy type one with cataplexy, you absolutely need a support system. And having people that understand and have the same lived and shared experiences is an invaluable asset. Narcolepsy type one has taken everything from me and now I'm rebuilding.

I've been homeless. I've lived on the street. I'm currently on a friend's couch right now. You know, my goals are to find a job or get back into school and gain my independence back. Giving up is not an option. Even though there's been a lot of days where you think about it. 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.