#apaperaday: Sexual health and fertility in Duchenne muscular dystrophy—An exploratory study
In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: Sexual health and fertility in Duchenne muscular dystrophy—An exploratory study
Today’s pick is from Hoskin et al from Muscle & Nerve on a small pilot study on sexual health and fertility in Duchenne patients. DOI: 10.1002/mus.28201
Due to improved care, Duchenne patients now live longer, into their 30s and 40s. Due to chronic use of glucocorticosteroids, puberty is delayed. Authors outline that there is a lack of study and information on sexual functioning for this group of ‘unanticipated adults.’
This is a very good point. It is great to improve care and survival, but you need to then also address the psychosocial issues that arise. Here, authors did a pilot study with 2 small online focus groups with 3 Duchenne patients each, aged 24-48 years.
One of the patients had never been on steroids, one in the past, and four were still using steroids. A common theme was that the patients wanted to be treated like adults. They also mentioned that there is very limited information about sex for patients with disabilities.
They agreed it was best to have a dedicated person to discuss sex and relationships with, but there was no agreement on who this person could/should be. A friend is ideal, but some patients become socially isolated. Parents can be awkward, and with carers, there may be boundary issues.
The men with Duchenne also outlined that the perception of others made dating difficult. One outlined he would post pictures on dating apps without his ventilator. Others mentioned that the dating apps were not ‘Duchenne friendly’ as they could not do the swiping motion.
When you have a ventilator, communicating becomes more challenging, especially when there is a lot of background noise, like in a bar – and many bars and clubs are not wheelchair accessible.
One man with Duchenne pointed out that he was gay and that there was zero information for him as everyone assumed all disabled people are heterosexual. The men did agree that testosterone to induce puberty was good, but that psychosocial support should be offered with it.
When dating, the men discussed the fear of rejection, though some pointed out that this would be easier if they would get support on how to cope, and others pointed out that also able-bodied people get rejected when dating, so this essentially made them more normal.
The physical barriers to having sex or being intimate were discussed. The men discussed paid services, and that even that could be challenging (aside from the taboo some felt it was): the carer would have to help with positioning.
The men with Duchenne wanted a relationship more than ‘only sex’. They all had considered parenthood, but felt this would be difficult (unable to care for the child) or selfish (likely not there when the child is 15-20).
The men said they would appreciate education on genetics as they were not aware that they cannot father a child with Duchenne (the way genetics work for X-chromosome-linked diseases: men give their X only to their daughters – these would be carriers, but their Y to sons).
Some men stressed that having children would depend on having the right partner and they would like to have a legacy. In summary, patients would appreciate more support and more information. They would also like to have dedicated people to discuss sexual health with.
This should be someone with enough time. Authors outline that this study is small and that more work is needed, not just with patients but also with carers and other people who can support. It is clear, however, that more attention is needed for this topic.
