Addressing Social Isolation in Narcolepsy and Idiopathic Hypersomnia: Julie Flygare, JD

WATCH TIME: 5 minutes

"Clinicians should realize that 1 in every 3 patients who walk into their office doesn’t know someone else living with the same condition."

Central disorders of hypersomnolence—including narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia—are all characterized by excessive daytime sleepiness but differ in their clinical features. Narcolepsy type 1 is uniquely associated with cataplexy, sleep paralysis, hallucinations, and fragmented nighttime sleep, often linked to low cerebrospinal fluid hypocretin levels. Narcolepsy type 2 shares many symptoms but occurs without cataplexy and with normal hypocretin levels. Idiopathic hypersomnia, distinct from both forms of narcolepsy, lacks the rapid REM sleep transitions seen in narcolepsy and is instead marked by prolonged sleep duration, severe sleep inertia, and unrefreshing naps. Since the conditions have overlapping symptoms and diagnostic challenges, many individuals experience delayed diagnoses or remain undiagnosed, reinforcing stigma and misconceptions that influence daily life and social interactions.

Beyond the diagnostic hurdles, both narcolepsy and idiopathic hypersomnia profoundly affect quality of life, disrupting employment, education, and relationships. Limited public awareness contributes to social isolation and negative stereotypes, further exacerbating the burden on patients. Individuals with narcolepsy frequently have reported high rates of depression, unemployment, and relationship difficulties, and those with idiopathic hypersomnia may experience similar struggles, including cognitive impairment and workplace challenges. Despite the well-documented impact of these conditions, research on the role of social support in patient adjustment remains scarce. Understanding how peer connections influence adaptation to these diagnoses may provide valuable insights for improving clinical care strategies.

A recent published survey study conducted by lead author Julie Flygare, JD, explored this gap, revealing that only a small portion of patients with narcolepsy or idiopathic hypersomnia felt adequately supported in adjusting to their condition. In a discussion with NeurologyLive^®, Flygare, president and CEO of Project Sleep, emphasized the critical role of social support in managing narcolepsy and idiopathic hypersomnia. She stressed the need for clinicians to actively address this aspect of care, as many patients struggle with isolation and a lack of peer connections. As the field works to improve patient outcomes, Flygare noted that key considerations include how clinicians can incorporate discussions of social support into routine visits, what barriers hinder patient connections, and how advocacy organizations can enhance outreach efforts to better support newly diagnosed individuals.

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