CALEB, living with Duchenne,
and his family.

Mental Health & Self Care

Addressing the emotional, cognitive, and behavioral impact of Duchenne

For understandable reasons, Duchenne muscular dystrophy is commonly perceived to be a disease primarily affecting the muscles. Many do not know, however, that Duchenne causes abnormal expression of dystrophin in the brain. The function of dystrophin in the brain is not as well understood, but recent studies have shown individuals with Duchenne to be more prone to ADHD, learning difficulties, anxiety, and autism spectrum disorder (ASD).

Joshua and Diane: One Family's Story

Joshua talks about his passion for music and his journey with Duchenne, with additional perspective from his mom, Diane.

Care for the Caregiver

Choosing Joy in the Face of Hardship

JB and Nate recall the shock and grief that accompanied their son Charlie's diagnosis, and the choice that helps them to embrace each moment.

Katie: A Sibling's Perspective

As Katie relates, siblings fulfill a unique role in Duchenne families. Neither patient nor parent, siblings nonetheless bear a significant burden and play a key part in building bridges of understanding and support with the larger community.

Resetting Expectations

“All I cared about is that I had my buddy.”

Listen to Mark reflect on his expectations as a father and how all that changed when his son was diagnosed with Duchenne.

Individuals with Duchenne as well as their families may require support at every stage of disease progression. These needs may be complex and can include psychosocial assessments, speech, and language therapy, social worker support, psychotherapy, educational interventions, and social development.

If you have concerns, speak to your child’s doctor or schedule an appointment with a professional who specializes in assessing and treating mental health problems.