For US Healthcare Professionals
IT TAKES
a comprehensive approach, going beyond symptom management, strategies, and work-arounds
TO LIVE WITH MY NT1
—TARA, 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.
Multiple treatment modalities may be used to manage symptoms of narcolepsy type 1 (NT1)1
Managing NT1 symptoms can be challenging, often requiring a multidisciplinary, multimodal approach.1,3
>50%
OF PEOPLE WHO WERE RECEIVING PHARMACOLOGICAL TREATMENT FOR NARCOLEPSY WERE ON >1 MEDICATION2*
*Results from a 15-minute online survey conducted in February 2022 of 88 US adults with NT1 (n=53) or NT2 (n=35).2
Patients may utilize a variety of symptom management approaches, in addition to treatment1,4
It can be important to engage your patients with NT1 in shared decision-making in order to tailor an optimal management plan that addresses their unique needs. This includes an understanding and discussion of potential medical and nonmedical approaches to holistic care.
Patients may need a comprehensive approach to NT1 symptom management4
>50%
of patients with narcolepsy reported trouble with memory or concentration2*
92%
of patients with narcolepsy reported excessive daytime sleepiness (EDS) as the most troubling symptom2*
~80%
of patients with NT1 or NT2 reported feeling isolated, depressed, or anxious2*
74%
of patients with NT1 reported cataplexy as one of their most troubling symptoms2*
*Results from a 15-minute online survey conducted in February 2022 of 88 US adults with NT1 (n=53) or NT2 (n=35).2
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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. 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 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. 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
TARA: My journey was a long journey. I always felt like something was off. I was misdiagnosed with a lot of things growing up. My parents just told me I had nightmares. But it ended up it was actually sleep paralysis and hallucinations. And, I then also had trouble sleeping. Lost a lot of friends, too, and missed out on a lot of things because of my sleepiness.
I was seeing a doctor and he was kind of concerned and then sent me to a sleep specialist, and that's when I finally got diagnosed.
I'm Tara and I have narcolepsy type 1. I am a pediatric sleep coach, just started my own business. It is hard to do things with narcolepsy type 1, so I make sure to break tasks up and not do the same thing for too long. So like I'll work for like an hour, but then I'll go do laundry or clean, do another task to kind of help, like switch things up and like wake up.
I am taking medication right now. I take nighttime and daytime medication. They do help, but I still do have symptoms. Like, I'm still tired every day. And that doesn't go away. I've always had cataplexy, but I was always told I was just clumsy because I drop things. It's usually when I'm stressed, my hands give out. So I like to crochet and do pottery and painting because it helps relieve stress, which is a huge trigger for my symptoms.
And 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.
JOEY: “If you could only eat one food and that's all. What would it be and why?”
TARA: Joey and I, when we first met, he really impressed me. He said something along the lines like that must be difficult for you. He didn't just be like, oh, you can fall asleep all the time, right?
JOEY: On a day to day basis, I help Tara in pretty much any way that I can think of. Mostly it's a smaller task here and there that makes a world of difference to her.
TARA: To have a successful date night, we have to eat earlier rather than later just because I get tired.
TARA: “I’m gonna steal some of yours.”
JOEY: “I’m gonna steal some of yours.”
TARA: I need someone who is very empathetic and so, like, having Joey. He's been great. There are people who care and are empathetic. It's really nice because I never really thought that I would get that. Narcolepsy type 1—it definitely took things from me, but it also gave me a lot of things. Starting my own business has really helped me in a lot of ways.
Working in the medical field, I just really got tired of having to advocate for myself and being told I had to do it a certain way, when that way didn't work for me. It was sucking the life out of me and now being my own boss, because I can take breaks when I need to, I can really manage my narcolepsy symptoms.
JOEY: Whether it's making copies of her pamphlets, like I drive her to make those copies, any way that I can save her a little bit of energy, make her a little bit more comfortable. It's little things like that. That's important to communicate.
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, like 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.