Thank you to psychologist Dr. Natalie Truba of Nationwide Children’s Hospital for identifying these “elephants in the room” in our webinar Understanding DBMD Behaviors for the Adolescents and Adults.
Elephants in the Room
For decades, the primary focus of care for individuals with Duchenne Muscular Dystrophy has been preserving muscle function. Through the cumulative efforts of science, advocacy and generous funding, our community has made incredible progress in preserving and prolonging that muscle function. Accordingly, 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.” Having graduated from school with no employment, many are isolated at home. With virtually no daily routine, there’s very little to distract them from their mental health, their physical health, and from the daily reminders that their caregivers won’t be around forever.
There is more to life than this.
By identifying and discussing these hidden truths, we can help our adults with Duchenne truly live during these newfound years. There are four issues in particular that complicate the achievements of our adults with Duchenne. Those are:
More to Consider