The Effect of Menstrual Issues on Young Women with Angelman Syndrome

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Study Objective—To characterize menstrual health issues and their effect in young women with Angelman syndrome (AS). Our secondary objective was to compare them with young women with autism spectrum disorders (ASDs). Design—Cross-sectional convenience sample survey. Setting—An institutional review board–approved Web-based survey of young female members of the Angelman Syndrome Foundation. Participants—Caregivers of young women with AS, aged 12–25 years. Interventions—None. Main Outcome Measures—Symptom characterization and effect of menses on young women with AS. Results—Menstrual and premenstrual symptoms were common among young women with AS, but infrequently caused problems at home or school. Less than half of the subjects used hormones to control their flow. Of those who used hormones, 75% used them continuously. Caregivers were satisfied with their method to control periods. Girls with seizures were more likely to use hormonal methods to control menses than those without seizures. Menstrualassociated morbidity in young women with ASD and AS was fairly similar, but with greater morbidity in the ASD group than in the AS group. However, girls with AS had more problems with menstrual hygiene with almost all of them requiring full assistance for managing hygiene. Conclusion—In this group of young women with AS, who have moderate to severe neurodevelopmental disabilities and cannot manage their own hygiene, menstruation is not associated with significant problems. Menstrual management by hormones is used by less than half. When hormonal therapy is used, it is most commonly used continuously to suppress menses.