Adults with MD report major gaps in sexual, reproductive healthcare: Study
Strong desire exists for disability-informed guidance from medical teams
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Adults with muscular dystrophy (MD) in the U.S. report widespread gaps in sexual and reproductive healthcare, according to surveys and interviews.
Such gaps included a lack of private clinical time, provider discomfort, and unaddressed concerns about fertility and relationships. At the same time, participants indicated a strong desire for proactive, disability-informed guidance from their medical teams.
“Findings highlight the urgent need for inclusive, accessible, and holistic sexual and reproductive healthcare tailored to the lived experiences of people with MD,” the authors wrote.
The survey and interview responses were published in the Journal of Neuromuscular Diseases, in the study “Moving beyond puberty: Listening to lived experience to expand sexual and reproductive healthcare for adults with muscular dystrophy.”
Sexual health in MD remains understudied
MD is a group of conditions characterized by progressive muscle degeneration and weakness. Each type of MD has its own clinical profile and outcomes, with some emerging early and progressing rapidly, while others appear later in life and progress slowly.
Improved multidisciplinary care and targeted therapies have extended the life expectancy in MD. As a result, sexual and reproductive health has grown into an essential part of disease management. In addition to the physical limitations, sexual health in MD is further complicated by long-term corticosteroid therapy, which slows disease progression but often suppresses puberty.
Researchers conducted interviews with 30 adults with various MD types to explore their sexual and reproductive healthcare experiences.
“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,” the team wrote.
Of the participants (mean age 31 years), 23 had Duchenne MD, two had Becker MD, and five had an unspecified type (17%). Two-thirds lived with parents (69%). The majority identified as white (63%), with others identifying as Hispanic/Latino (10%), Asian (10%), or not disclosing (17%).
Regarding medical care, 17% of participants, despite being adults, still saw a pediatrician as their primary care provider. Most (60%) reported never having discussed sexual health with a clinician, and when discussions did occur, they were infrequent (27%). Among those who had any such discussion, initiation was shared between physicians and patients, while one cited a partner, and none cited their parents or caregivers.
‘I would have said something, but my parents were there’
One frequently raised barrier was the absence of private, confidential time with clinicians, cited by 33% of participants. They described how the presence of caregivers during visits limited their ability to raise concerns about sexual health. One participant said, “I would have said something, but my parents were there.”
Again, one-third of participants (33%) described receiving messages that people with MD were unlikely to have children, which discouraged fertility-related discussions. Over time, some internalized these messages. One explained: “Throughout my whole life doctors and other people have said [that] people with muscular dystrophy are asexual and can’t have kids … that is all very disheartening.”
Provider discomfort and a narrow focus on the medical aspects of puberty, such as testosterone initiation, rather than overall sexual health, was identified by more than one-fifth of participants (23%). Some (23%) described feeling invalidated by care providers or encountering assumptions that they had no romantic or sexual interests. Patient discomfort in discussing sexual health, often tied to uncertainty about disability or limited sexual experience, was also cited (30%).
Two-thirds (67%) requested practical sexual health information, including hygiene, self-care, and strategies for sexual activity. Some (40%) asked that clinicians proactively begin sexual health conversations, rather than waiting for patients to raise the topic.
”Is it possible for me to have normal sex and relationships … getting married and have kids, you know, if that’s what you want?
Requests for mental health support to counter negative social and media messages were raised by 40%. Participants described how cultural ideas about disability affected their sense of masculinity, self-worth, and expectations around relationships.
“A lot of people with Duchenne are young men. Young men have a lot of issues with masculinity, especially when they are disabled. And with glucocorticoids [corticosteroids], we tend to be underdeveloped, smaller than average, which was very painful in the process of being a masculine individual,” one participant said.
Ten participants (33%) requested guidance on dating and relationships. They described uncertainty around initiating relationships, navigating dating, and discussing their disability with potential partners.
Some raised broader questions about the possibility of long-term relationships and family life: “Is it possible for me to have normal sex and relationships … getting married and have kids, you know, if that’s what you want?”
Education about options for sexual fulfillment was also noted (30%), particularly among individuals with physical limitations affecting sexual function, with participants describing uncertainty about how to achieve sexual release safely or independently.
Finally, seven patients (23%) raised the importance of peer connection and community-based resources. Participants described how connecting with others with similar lived experiences could provide practical guidance, emotional support, and a sense of belonging.
“By centering the perspectives of U.S. adults with MD, this study underscores the importance of integrating sexual health into multidisciplinary care,” the researchers wrote. It also “highlights the need for provider training and clinical resources that are co-created in partnership with individuals with muscular dystrophies and other lived experience stakeholders to ensure relevance, respect, and shared agency across the lifespan.”
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