Duchenne muscular dystrophy can bring many psychosocial issues along the the different stages of the disease as discussed in the Guide for Families.
People living with Duchenne have a higher chance of learning and behavioural challenges. Some challenges are due to the lack of dystrophin in the brain and others may be due to adjusting to physical limitations. Some medications such as steroids, which are often started in the early or late ambulatory stage can also play a role. Some children taking steroids may have difficulty with impulse control, anger, mood changes, attention and memory, and others may not. Family support is essential from the diagnosis.
In the late ambulatory stage, walking will become increasingly difficult, with greater struggle during motor activities. Continued evaluation of learning delays or specific learning disabilities is important at this stage and specific interventions may be necessary to address coping strategies for dealing with the loss of physical strength and functions. Caregiving requires emotional and physical energyand support.
Education goals, as well as where to live, study, workare extremely important in this stage. As people with DMD become young adults, it is important to maintain independence, to form and maintain relationships. While some young adults with DMD have no psychosocial issues, some do. For this reason screening for anxiety and depression is fundamental as well as providing psychological support to the young adult and the family.
A full and productive life as a independent adult living with Duchenne requires planning. Developing a plan to transition from adolescence to adulthood should begin at least by age 13 or 14. The transition plan should include considerations for education, employment, housing, transportation, and mobility within the community, and transferring medical care. While many people do not experience psychosocial problems, some adults with Duchenne may experience anxiety, isolation or depression that requires a specific support and intervention.
Text adapted from the DMD Family Guide