Narcolepsy is a chronic neurological disorder of the sleep-wake cycle, characterized by excessive daytime sleepiness, nighttime sleep disturbances, and REM sleep-related phenomena that intrude into wakefulness. Narcolepsy is categorized into two types – NT1 associated with cataplexy (sudden loss of muscle tone during wakefulness) and NT2 without muscle weakness.
Narcolepsy can be a debilitating chronic condition with widespread impacts on daily life, including challenges with employment, school, and relationships, particularly for women acting as the primary family caregiver. Difficulty maintaining treatment regimens and unpleasant side effects pose barriers to effective symptom management. Although women and men are about equally affected and report similar narcolepsy-related symptoms, women are more likely to experience an extremely long pathway to an accurate diagnosis, up to 12 years longer than men. Many women with narcolepsy also face challenges during pregnancy and lactation, often stopping medication near conception and suffering from additional symptoms as a result. Building awareness about narcolepsy symptoms and treatment options among both patients and providers will offer women opportunities to identify symptoms earlier, reduce the delay in obtaining appropriate care, and make informed decisions about treatment throughout the life course.
SWHR convened an interdisciplinary working group of health care providers, researchers, patients/patient advocates, and policy leaders for a closed, roundtable meeting on March 31, 2022. During the roundtable, the SWHR Narcolepsy Working Group discussed scientific and policy issues around narcolepsy in women, including strategies for better symptom management and how to improve access to treatments and care.
