For decades, the primary focus of care for individuals with Duchenne Muscular Dystrophy has been preserving muscle function. As a result, more and more of our adults with Duchenne are living well into their 20s, 30s, 40s, 50s.

The problem now, however, is that in many cases, these adults really are “just living.” By identifying and discussing the “elephants in the room,” we can help our adults with Duchenne truly live during these newfound years.

One such elephant is the multiple mental health challenges individuals with Duchenne face. Not only do challenges bear down on them from both their physiology and environment, but our loved ones with Duchenne have some of the most complicated mental health challenges with some of the fewest resources.

Most of our adults with Duchenne experience extreme social isolation, or at least infrequent contact with others outside their caregivers. Without the experience of seeing how other humans act, interact and respond, it can be very challenging to identify a “functional” baseline for oneself. If there’s minimal interaction beyond the immediate caregiver bubble, having enough information to engage in productive self-reflection may be impossible.

To complicate matters even further, mental health concerns tend to be significantly more complicated to identify than for the general population due to the physiological effects of Duchenne on the brain.

If an adult with Duchenne does choose to pursue mental health help, simply finding a provider who has time on their schedule – or is at least a little qualified to work with DMD – may take months. After that hard work pays off and a good candidate has been identified, there’s no guarantee the provider will have time available, will deem themselves qualified to work with an adult with Duchenne, or will want to take on a challenge like Duchenne.

If an adult with Duchenne is successful in securing appointments with a mental health provider, the truth is that whoever is working with the adult with Duchenne is working in the dark. It is incredibly unlikely that a provider will have experience working with DMD and even less likely that they have DMD themselves. True, as professionals, they will likely do the best they can, but there is just no roadmap for the providers to follow, particularly when it comes to two hallmarks of Duchenne: anxiety and depression.