October 31, 2022

Narcolepsy Toolkit Strives to Make Women’s Sleep Health A Priority

By Monica Lefton, SWHR Communications Manager.  

Sleep is essential to overall health and well-being, as it aids in the body’s ability to maintain proper brain function and physical health. While women generally sleep longer than men, they are more likely to report higher levels of sleepiness, increased use of sleep medications, and lower quality sleep. Still, even with longer durations of sleep, one third of women get less than the recommended number of hours of sleep each night. 

Poor sleep and sleep disorders, including narcolepsy, are a global public health issue affecting tens of millions of individuals, but they often go unrecognized and under-reported. Further, because sleepiness and fatigue have become normalized in many parts of society, they can often be dismissed by women as part of daily life rather than seen as a sign of larger health issues.  

Narcolepsy specifically is a chronic sleep disorder affecting 130,000 to 200,000 individuals in the United States. It is characterized by persistent and excessive daytime sleepiness, an inability to regulate sleep-wake cycles, and, in some cases, cataplexy (sudden change of muscle tone, which can be triggered by strong emotions). The exact causes of narcolepsy remain unknown. 

While men and women experience similar narcolepsy symptoms, women are diagnosed an average of 12 years later than men. Women may also experience additional challenges managing their narcolepsy across their roles as caregivers, employees, partners, and more.  

To support women living with narcolepsy and their families as they navigate diagnosis, treatment, and care, the Society for Women’s Health Research developed the Narcolepsy Toolkit: A Woman’s Empowerment Guide. The toolkit includes information about sleep health across the lifespan, narcolepsy symptoms and treatment options, and wellness tips for home, school, and the workplace. The chapters of the toolkit include the following: 

  1. Understanding Sleep and Sleep Disorders
  2. Understanding Narcolepsy
  3. Managing Your Narcolepsy Care
  4. Wellness Tips for Narcolepsy Across the Lifespan
  5. Weekly Narcolepsy Diary

Download The Narcolepsy Toolkit

Because narcolepsy symptoms often begin to appear during adolescence, they may be confused with something else. As a result, people, and particularly women, can go years before their narcolepsy is recognized and diagnosed. Therefore, it’s important to understand the signs of good sleep, listen to your body, and consult a health care professional when your energy levels are negatively affecting your life. SWHR hopes this toolkit will be able to help women prior to and following their narcolepsy diagnoses.   

This toolkit is part of SWHR’s Narcolepsy Program, launched in 2022 to address barriers to care in science, education, and policy related to narcolepsy in women. With the support of health care providers, researchers, patients, advocates, and policy leaders, the program is exploring strategies to provide equitable and quality care for women with narcolepsy. Additional program resources include the Narcolepsy and Maternal Health and World Narcolepsy Day fact sheets.  

SWHR’s Narcolepsy Program is supported by educational sponsorships from Avadel Pharmaceuticals and Harmony Biosciences. SWHR maintains editorial control and independence over educational content.