Moving beyond puberty: Listening to lived experience to expand sexual and reproductive healthcare for adults with muscular dystrophy

Youth and adults with muscular dystrophy (MD) face sexual and reproductive healthcare barriers shaped by the physical, social, and emotional impacts of a progressive neuromuscular condition. Despite sexual health being central to well-being, it remains understudied, as the needs of disabled individuals are often overlooked due to misconceptions and false narratives of disinterest. To address this gap, we conducted semi-structured interviews with thirty adults with various MD types, exploring their sexual and reproductive healthcare experiences. Using a hybrid inductive-deductive thematic analysis, we identified six themes related to barriers in care: patient discomfort discussing sexual health and insecurity about disability or inexperience; provider discomfort and overemphasis on medical puberty; lack of private, confidential time with providers; unaddressed fertility and reproductive concerns; provider invalidation or assumptions about sexual or romantic interest; and reliance on self-education from pornography or online sources. We also identified six themes for actionable improvements: patients desired increased provider-initiated conversations; practical sexual health information including hygiene and self-care; dating and relationship guidance; mental health support and resources to counter negative media messages; education on safe options for sexual fulfillment; and community and peer connection resources. Overall, participants expressed a strong desire for proactive, confidential, and affirming care addressing the full spectrum of sexual health needs while integrating mental health and peer support. Findings highlight the urgent need for inclusive, accessible, and holistic sexual and reproductive healthcare tailored to the lived experiences of people with MD.