Dealing with Duchenne muscular dystrophy (DMD) is a challenge physically, but also mentally. In addition to the direct cognitive impacts of the disease, children and adults living with DMD often experience depression and anxiety related to their condition. Family members also face their own worries, as well as burnout from the burden of daily caregiving.
Finding mental and emotional support is an important part of the DMD journey. Here’s where to start.
Why finding mental health support is worth it
The anxiety and stress created by living with a progressive, chronic disease affects the mental health and quality of life of both patients and their caregivers. Finding mental health support might sound like an additional task — but the benefits can be well worth the effort.
Benefits for patients
For patients with DMD, emotions such as anger, irritability, aggression, hyperactivity, anxiety and stress are common: Studies have shown that over 80% of patients have mental health concerns. On top of the realities of daily life with DMD, a lack of dystrophin protein in the brain and the use of corticosteroids can also impact mood and behavior.
Regular therapy sessions to support mental well-being can help. A combination of professional medical support, medication and community support is particularly beneficial to:
- Reduce anxiety.
- Prevent the onset of depression.
- Boost quality of life.
- Improve adherence to medication.
- Strengthen relationships to avoid social isolation.
Benefits for families
Caregivers and families can also benefit from psychological care and community support. Parents may have feelings of loss and depression. The physical demands of daily caregiving, anxiety about a child’s future and worries about finances put caregivers at risk of anxiety and depression.
Studies have shown that support groups can help manage this stress. These groups help parents feel less isolated and provide a space where they can express their feelings.
Learn more about DMD treatment and care
Where to find mental health support for DMD
Mental and emotional support comes in different forms. The best source of mental health support will depend on someone’s main challenges and where they are in the disease journey, among other factors.
Professional services
Psychologists, psychiatrists or licensed counselors and therapists are essential to managing emotional distress associated with living with DMD. Finding a mental health professional with the knowledge to help those struggling with DMD may be challenging, however. Patient organizations can help. For example, the Muscular Dystrophy Association (MDA) Care Center Network can recommend local providers familiar with the disease.
Care teams may also be a source of support. Your regular doctor might have suggestions for therapists or changes in daily habits, and can also prescribe medication to ease emotional and behavioral issues.
DMD support groups
There are many DMD patient support groups available online or in person. They offer an invaluable resource for both patients and families to connect and discuss their shared experiences of living with DMD.
These organizations offer many forms of support. For example, some can help connect families navigating a recent diagnosis with those who have been living with DMD for years, while others offer regular group discussions.
Family therapy
When one family member suffers, the whole family is affected. Family therapy ensures care for parents who may be feeling overwhelmed, boys living with DMD and their siblings, who are likely feeling overlooked. Family therapy can help support the emotional well-being and mental health of the whole household.
Sign up here to get the latest news, perspectives, and information about DMD sent directly to your inbox. Registration is free and only takes a minute.
