The Power of Social Support in Narcolepsy and Idiopathic Hypersomnia Care

Julie Flygare, JD

(Credit: Project Sleep)

For patients living with narcolepsy or idiopathic hypersomnia, managing the condition may go beyond medical treatment such as with social support playing a vital role in their overall well-being. Many patients can experience isolation following their diagnosis, often lacking connections with others who share their condition. Recent research suggests that peer support could significantly improve quality of life by providing emotional reassurance, practical advice, and a sense of community. However, social connections are often overlooked in clinical care, leaving many patients to navigate their diagnosis alone.

Highlighting this issue, a recent international survey published in Sleep Medicine reported that only a small percentage of patients with narcolepsy or idiopathic hypersomnia felt supported in adjusting to their condition.¹ Conducted by Project Sleep², the online survey gathered responses from 1,308 adults, including those with narcolepsy type 1 (48.4%), narcolepsy type 2 (28.7%), and idiopathic hypersomnia (22.9%). The majority of respondents were women (87.7%), White (88.8%), and under 40 years old (68.7%), representing 38 countries, with most residing in the United States (65.5%), followed by Europe (15.4%) and Australia/New Zealand (11.8%). These findings underscored the importance of clinicians assessing social support and guiding patients toward community resources.

One advocate working to bridge this gap is Julie Flygare, JD, founder of Project Sleep and a patient living with narcolepsy type 1. In a recent conversation with NeurologyLive^®, Flygare shared her personal experience of feeling isolated after her diagnosis and emphasized the critical role of peer connections in navigating life with a sleep disorder. She discussed the need for clinicians to acknowledge the social aspect of these conditions, encourage patients to seek support networks, and introduce them to advocacy organizations. Flygare also highlighted findings from Project Sleep’s survey, which revealed that many patients go years without knowing anyone else with the same condition, underscoring the urgent need to integrate social support into clinical care.

NeurologyLive: What role do you think social connections and peer support groups play in helping patients living with these sleep disorders adjust to life with them?

Julie Flygare, JD: It's really striking. I am a person living with narcolepsy type 1 myself, and the medical process—figuring out your symptoms and what they could be—can take years. Then, you finally get to a sleep doctor, undergo a sleep study, and hopefully receive a definitive diagnosis. For me, that was type 1 narcolepsy. Then you start talking about medications and treatment options, and that's really the medical process.

But then you leave a doctor’s office—or for me, I left the doctor’s office with a prescription—and I didn't know any other people living with narcolepsy. All I really knew about narcolepsy was from movies, where it was often the butt of a joke. It wasn’t long before I realized narcolepsy wasn’t a joke at all. It was a very serious neurological condition that impacted not only my daytime but also my nighttime sleep, affecting my ability to function as a law student and invading my life in so many different ways. The symptoms ranged from excessive sleepiness to the muscle weakness of cataplexy, hypnagogic hallucinations, and sleep paralysis—these blurred boundaries between dreams and reality. It was really disruptive.

So, this wasn’t a joke at all, but I didn’t know other people with narcolepsy, and that created this sense that the condition wasn’t real. When you go through your day and your life without knowing anyone else who shares this part of your identity—which was so unwelcome—it’s very challenging. How do you learn about the condition? How do you have role models or peers to talk to? This is something I’ve been speaking about for over 10 years: the concept of prescribing social support. Doctors should be talking to their patients about connecting with social support, whether that’s peer support groups, advocacy efforts, or even seeking professional support.

For me, when I was diagnosed with narcolepsy, I had a therapist for 2 years who helped me process this major life change. Even though great research was happening in the narcolepsy and idiopathic hypersomnia space, and research had shown for decades how detrimental these conditions were to quality of life, no one was really talking about the social experience as it pertained to peer-to-peer connections. I saw it firsthand as I began raising my voice through my blog—back when blogs were a thing—and eventually founding Project Sleep, starting a nonprofit, running awareness campaigns, and writing a memoir about narcolepsy.

People reached out to me all the time, saying how impactful it was to feel like they knew me, even if we were across the world. That shared experience was life-changing for people, but researchers weren’t really asking about it. They weren’t investigating whether people knew others with the same condition, how they found them, or whether it was helpful to know them. So finally, clinicians who support our efforts decided to conduct research and ask the patient population worldwide whether they knew others living with the same condition.

Would you say that social connections are essential for individuals living with a sleep disorder?

To think that we got over 1300 respondents in just 2 weeks—people were really blown away by that. But I wasn’t that surprised because I knew that over the last 10 to 12 years, we had built up that community relationship by relationship—whether by responding to messages, developing programs like Rising Voices (a story-sharing program), or fostering other initiatives. It has been a slow but authentic process, and the power of that community is incredible. People’s willingness to participate and be part of our efforts is something I am always in awe of and grateful for.

So, translating that trend in the patient community into research is something I’m proud of. I had been trying to talk about social support before, but I felt like clinicians’ eyes would glaze over. I would say, “This is just as important as medications.” I’m not saying medications aren’t important—they’re foundational—but social support is also foundational. They go hand in hand, and together, they can lead to better outcomes. So finally, taking that step to develop research to back what we were seeing in the patient community was really important.

In terms of assessing a patient’s level of social support after their diagnosis, how would one go about that? Are there specific questions or approaches that would be helpful?

We weren’t really sure how to develop the survey because I hadn’t seen this question asked so directly in other communities either. So, we asked people whether they knew someone living with the same condition at the time of their diagnosis. Very few did. At the time of diagnosis, 91% of our survey respondents did not know anyone living with the same condition. That’s not surprising because these are rare conditions. In some cases, there are familial groupings—sometimes a child gets diagnosed because they have a parent with narcolepsy, or families become more aware of sleep disorders and recognize them more easily in their relatives. But for most, they didn’t know anyone else.

We also asked, “If you didn’t know someone at the time of your diagnosis, how long did it take before you did?” We left it up to respondents to define what “knowing” someone meant—whether online or in person—but we specified that it meant feeling comfortable asking that person a question. Even after diagnosis, 37% of respondents—over a third of people living with narcolepsy and idiopathic hypersomnia—still didn’t know anyone else with the same condition. That’s really striking to me. It means that clinicians should realize that 1 in every 3 patients who walk into their office doesn’t know someone else living with the same condition.

It’s striking to think about that. Clinicians see multiple patients with narcolepsy or idiopathic hypersomnia, but those patients don’t see or connect with each other. For those who did meet others, there was a wide range of experiences—some found social support quickly, within a few months or years, while others took much longer. We also asked if knowing someone else with the same condition had a positive impact, and 80% of respondents reported a positive or very positive impact. Knowing someone else was also strongly associated with feeling supported in adjusting to their diagnosis. While we can’t say that’s causal, it was a striking association.

As a patient yourself, living with narcolepsy, what would you recommend to clinicians in terms of promoting social support in clinical practice?

I think clinicians can start by simply asking their patients, “Do you know someone else living with this condition?” It’s a great way to begin a conversation. Social support can take many forms—not everyone wants to go to a support group, and that’s okay. But letting patients know about available patient advocacy organizations is crucial. In the U.S., there are 4 major groups, plus others worldwide. These organizations are great starting points for patients to explore what’s available to them.

We often hear from people who went years after their diagnosis without knowing that Project Sleep existed, and when they finally find our resources, they’re so excited. That just feels sad because they could have had that support much earlier. So, letting patients know about advocacy organizations is a good start.

People with narcolepsy are diverse, and not every patient connection results in finding a new best friend. But over time, when people engage with patient advocacy groups, participate in programs, and take part in advocacy, they meet different individuals. Eventually, they often find close connections with others who truly understand their journey. They also find role models—people further along in their experience—who they can look up to. That’s different from peer support but just as important.

Visually, I think of social connection as opening a door. Without it, you’re behind a closed door, alone. But when that door opens, you see a world of others who share your experience. That’s powerful.

Transcript edited for clarity.

REFERENCES
1. Flygare J, Oglesby L, Parthasarathy S, et al. Social support and isolation in narcolepsy and idiopathic hypersomnia: An international survey. Sleep Med. 2025;125:65-73. doi:10.1016/j.sleep.2024.11.013
2. Project Sleep. Homepage. Accessed February 3, 2025. https://project-sleep.com/