November 17, 2023

Addressing the Intersection of Narcolepsy and Maternal Health Care

Panelists from left to right: Monica Gow, MPA; Irene Aninye, PhD; Katherine Sharkey, MD, PhD; Jennifer Mundt, PhD, DBSM (moderator) 

By Irene O. Aninye, PhD, Chief Science Officer  

Narcolepsy is a chronic sleep disorder affecting nearly 200,000 individuals in the United States, characterized by persistent daytime sleepiness, an inability to regulate sleep-wake cycles, and, in some cases, cataplexy. Women tend to experience particular challenges managing narcolepsy across their lifespan due to both natural biological processes – such as menstruation, pregnancy, and menopause – and social roles – such as caregiving, careers, and motherhood.  

During the 5th Annual Scientific Conference of the Society of Behavioral Sleep Medicine (SBSM) earlier this month, SWHR held the symposium “Addressing the Intersection of Narcolepsy and Maternal Health Care.” The session was inspired by a 2022 SWHR interdisciplinary narcolepsy working group, who identified unmet needs and challenges for women surrounding childbearing and living with narcolepsy. SWHR’s symposium provided a platform for psychology and behavioral medicine practitioners to discuss research gaps, disparities in clinical training, and opportunities for advocacy and innovation to advance narcolepsy care for pregnant populations. 

During the symposium, Irene Aninye, PhD, SWHR’s chief science officer, presented about SWHR’s interdisciplinary approach to advancing narcolepsy research and care for women. She highlighted the outcomes of the roundtable convening and SWHR’s ongoing efforts to build greater public awareness around narcolepsy and its impacts on women’s health. The SWHR Narcolepsy Program has published a patient toolkit that features educational materials to support women living with narcolepsy and a fact sheet that highlights wellness tips for pregnant populations. SWHR has also amplified personal stories related to narcolepsy, including a video testimony from Ashley, who discussed the hardships and successes of navigating her narcolepsy care during her two pregnancies. 

Panelist Katherine Sharkey, MD, PhD, then discussed clinical approaches to improving care for women living with narcolepsy during pregnancy and postpartum. A physician and an associate professor of medicine and of psychiatry and human behavior at Brown University, Dr. Sharkey specializes in perinatal sleep research. She reviewed study data that reported providers stopped or reduced treatment in 80-90% of cases across 6 different narcolepsy medications during conception and at least 90% of the time during pregnancy. Dr. Sharkey also presented promising data about breastmilk production, drug concentration in milk, and child growth trajectory when mothers continue certain medications during pregnancy and lactation. 

The symposium closed with a charge from panelist Monica Gow, MPA, co-founder and executive director of Wake Up Narcolepsy (WUN), to engage the patient voice in health care policy solutions. Gow and her husband started WUN six months after their son was diagnosed with narcolepsy and have grown the grassroots organization into a national advocacy leader for people with narcolepsy and their families. Gow shared insights from her work over the years, focusing on recommendations for health care providers to actively engage with pregnant patients and support them as they navigate their maternal health journeys – from planning for a family, through pregnancy, and into parenthood. 

Panelists agreed that to successfully address challenges at the intersection of maternal health and narcolepsy care for women, researchers, health care providers, and policymakers must maintain a patient-centered focus in their work. SWHR’s symposium aimed to do just that – elevate the patient voice and recenter the patient experience – and to do so during a key meeting of behavioral sleep scientists. The symposium represents part of SWHR’s ongoing work in the sleep health space to eliminate barriers to care by advancing science, education, and policy related to narcolepsy in women. 

For questions about SWHR’s sleep work, please contact SWHR Chief Science Officer, Dr. Irene Aninye