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. 2025 Mar:158:104924.
doi: 10.1016/j.ridd.2025.104924. Epub 2025 Jan 25.

Sleep health of adults and children with Moebius syndrome

Jessica R Dietch  1 , John Richmond T Sy  2 , Ellie Anderson  3 , Kathleen Bogart  4
Affiliations

Sleep health of adults and children with Moebius syndrome

Jessica R Dietch et al. Res Dev Disabil. 2025 Mar.

Abstract

Introduction: Moebius syndrome is a rare congenital disorder with frequent anecdotal reports of sleep disturbances not sufficiently categorized by prior literature. The present mixed-methods, two-phase study aimed to characterize the sleep health and symptoms of a cohort of adults and children (via parent proxies) with Moebius syndrome.

Methods: In Phase 1, participants were 46 adults with Moebius Syndrome (Mage=33.5[13.0]; 72 % female) and 17 parent-proxies for children with Moebius Syndrome (child Mage=10.47[3.4]; 53 % female). Participants completed a self-reported questionnaire battery. In Phase 2, five adults (Mage=25.4[6.5]; 100 % female) from Phase 1 completed 2 weeks of sleep diary and actigraphy, 2 nights of single-channel EEG, and diagnostic and qualitative interviews.

Results: Adults endorsed elevated rates of self-reported sleep disorder symptoms including sleep apnea (26 %), insomnia (56 %), nightmares (35 %), excessive daytime sleepiness (30 %), cataplexy (26 %), REM sleep behavior disorder (61 %), and parasomnias (100 %). Children had elevated rates of sleep disturbances (71 %), sleep-related daytime impairment (82 %), parasomnias (76 %) and daytime sleepiness (53 %). Qualitative interviews revealed participants endorsed a history of sleep problems dating to childhood and continuing into adulthood that impacted social relationships and quality of life and had experienced little treatment success.

Discussion: These findings shed light on the constellation of sleep health experiences among individuals with Moebius syndrome. Poor sleep health may represent a modifiable treatment target to improve health and well-being in individuals with Moebius syndrome. The heterogenous nature of sleep problems among people with Moebius syndrome may not respond well to a one-size-fits-all intervention, instead necessitating personalized approaches.

Keywords: Cataplexy; Insomnia; Moebius syndrome; Parasomnia; Sleep health.

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Conflict of interest statement

Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Jessica R. Dietch reports financial support for this project was provided by Moebius Syndrome Foundation. Dr. Dietch’s work on this project was partially supported by a grant from the National Institutes of Health (K23HL157698). Additionally, Kathleen Bogart reports a relationship with Moebius Syndrome Foundation that includes: board membership. The other authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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