Narcolepsy Toolkit: A Woman’s Empowerment Guide


Published 10/31/22

Narcolepsy is a chronic sleep disorder that 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).

Although narcolepsy affects men and women equally and similarly, women are diagnosed an average of 12 years later than men after symptom onset. Narcolepsy symptoms often begin to show up during adolescence, but can go unrecognized for many years before a diagnosis is made. The exact cause of narcolepsy is unknown.

The Society for Women’s Health Research’s Narcolepsy Toolkit: A Woman’s Empowerment Guide was created to aid women living with narcolepsy and their families as they navigate their diagnosis, treatment, and care journeys. The toolkit includes information about sleep health across the lifespan, narcolepsy symptoms as well as other common health conditions, treatment options, and wellness tips for managing narcolepsy at home, school, and the workplace.

Download Toolkit

What’s in the Toolkit?

Understanding Sleep and Sleep Disorders

Understanding Narcolepsy

Managing Your Narcolepsy Care

Wellness Tips for Narcolepsy Across the Lifespan

Weekly Narcolepsy Diary

Learn more by checking out the guide GlossaryResources, and References sections.

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. The program engages health care providers, researchers, patients, advocates, and policy leaders to explore strategies to address knowledge gaps, unmet patient needs, and relevant policies that present barriers to equitable and quality care for women with narcolepsy.

Explore the Toolkit Further in this Webinar

Clinician Event, Patient Event, Policymaker Event

Narcolepsy & Women’s Health: A Wake-Up Call

Hosted by SWHR

SWHR hosted a webinar to share educational information about narcolepsy, including diagnosing, treating, and managing care, and to highlight the experiences of women living with narcolepsy.

November 9, 2022 @ 2:00 pm – 3:00 pm EST

View Event


Check out More Narcolepsy Resources

Narcolepsy and Maternal Health: Fact Sheet

View Fact Sheet

World Narcolepsy Day, September 22: Fact Sheet

View Fact Sheet

narcolepsy pregnancy
narcolepsy day

This document is intended to serve as an educational and informative resource and is not intended or implied to serve as a substitute for medical or professional advice. The Society for Women’s Health Research does not make medical, diagnosis, or treatment recommendations, nor does it endorse or promote specific screening or diagnostic tests. Patients and consumers should confirm information and consult a professional health care provider to determine individual needs. The Society will not be liable for any direct, indirect, or other damages arising therefrom.  


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

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