From preconception to parenting: reproductive health and pregnancy care in facioscapulohumeral muscular dystrophy.

Facioscapulohumeral muscular dystrophy (FSHD) is one of the more common hereditary muscle dystrophies, and its phenotype is well documented. Unfortunately, relatively little literature is available on FSHD regarding reproductive health, pregnancy, delivery and parenthood, which makes adequate counseling challenging for healthcare providers. This review provides an overview of the available research, complemented by expert recommendations on a broad range of topics, from contraception to fertility, preconceptional counseling, pregnancy and delivery care, and the postpartum period. It emphasizes the importance of tailored counseling, multidisciplinary care, and access to reliable FSHD-specific information and (peer) support networks. We aim to offer a comprehensive framework to improve the quality of care for individuals with FSHD as they manage the challenges around reproductive health, pregnancy, and parenting.