The following is an excerpt by Dr. Amanda Appel from our podcast episode “Duchenne and Desire” with Carolyn Kelley, DPT, PCS and Dr. Amanda Appel, MD, MPH. Click here for the full podcast.
Puberty, Sexual Curiosity and Duchenne
Dr. Amanda Appel: I think among people with disabilities, self-esteem can sometimes be a bit more of an issue for people with Duchenne. There are a lot of factors with Duchenne – in terms of corticosteroids, causing delays, growth, puberty and other things – that make you just a little bit different from your peers.
These Things Are Happening
Carolyn Kelley: Duchenne is a condition of muscles. And yes, Duchenne shows up in the brain, and it shows up in the heart, and you can have heart issues, and you can have ADHD, and you can have weakness… but you can also have delayed puberty.
And with delayed puberty comes low testosterone. Even though some boys don’t need it, a lot of boys go on supplemental testosterone. Then they go through puberty and are having all the hormonal shifts and feelings that their peers are having.
And so, I think it’s important to understand that individuals with Duchenne still have changes from a hormonal perspective. Erections are happening and interest is happening. And I think if we are ignoring that as a medical community, or as a parent group, then we’re not holistically taking care of the people that we are raising or working with.
Individualized Sexual Health Education
Carolyn Kelley: So, individuals with Duchenne do have to be careful, because if you have delayed puberty, and you’re not as mobile as other people, and you have low vitamin D, you’re at risk of fracture. So your sex may need to be a little bit more cautious and you have to understand the risk factors, but by no means does that mean that sex cannot happen.
Dr. Amanda Appel: I think, unfortunately, sexual health education is just not a priority. It’s something that people aren’t as comfortable talking about, period. And are even less comfortable talking about when it comes to people with disabilities. So I think much of the lack of sexual education for individuals with disabilities stems from that.
And I think the really important thing is that we just make sure that people with disabilities – at the bare minimum – have the same access to reproductive health education that their peers do. And number two, that we also start to work on creating appropriate reproductive health education and sexual health education for people with disabilities.
More To Consider