Research has shown that dystrophin is usually present in the brain as well as in the muscles. Scientists believe that when dystrophin is missing or partially functional, like in Duchenne and Becker, brain neurons may not function as well as they should. This can lead to learning and behavior challenges for some children. While not every individual living with Duchenne or Becker will have problems with learning or behavior, it’s important to acknowledge that some behaviors experienced may be related to the diagnosis.

While many families agree that the physical challenges of Duchenne and Becker are difficult, challenging behaviors greatly impact daily life, as well. Because the connection between dystrophin and the brain is not often discussed, parents and caregivers can feel isolated and undersupported in this area. To combat this, PPMD’s 30th Annual Conference convened a panel to discuss “How Managing Behaviors Impacts Your Quality of Life.” Panelists James Poysky, PhD, Andrea Miele, PhD, Natalie Truba, PhD, and Brandon Kozar, PsyD, MBA, opened the dialogue about how emotional dysregulation, social immaturity, learning challenges, & stress can affect the behaviors of children living with Duchenne/Becker. They emphasized that this can impact quality of life for not only the child but the entire family.

Watch the Recording

In addition to recognizing how behaviors can impact quality of life, it’s important to understand the influence of sleep quality, as well. Respiratory weakness, pain, positioning, and lack of quality sleep all play a role in sleep quality and can negatively impact overall psychological and physical health. During the “Sleep & Behavior: How They Impact Each Other” session at PPMD’s 30th Annual Conference, panelists dove into this topic to provide a better understanding and guidance on how to manage and treat sleep concerns to help improve overall behavior and wellness. 

Watch the Recording

It can also be beneficial to connect with other families who have experienced challenging behaviors related to Duchenne and Becker. Season 6 of PPMD’s Living Duchenne Podcast focuses on the theme of Normalizing Behaviors with a goal of letting parents know they are not alone in this journey. You can listen here.

Finally, please remember it is important to talk with your child’s medical team regarding any concerns you may have.  PPMD also has several resources that may be helpful:

• Understanding Learning and Behavior in Duchenne
• Behavior Challenges 
• Learning & Behavior- A Guide for Parents and Teachers
• The Psychology of Duchenne
• PPMD for YOU 1:1 Support 

Please email our team if you have other questions or if we can assist in any way: careteam@parentprojectmd.org