1 2 aim

Attention to mental well-being in DMD/BMD families

Living with Duchenne and Becker muscular dystrophy (DMD and BMD) has a profound impact on the lives and mental health of the individual and their family. People affected may suffer from depression, stress and anxiety. These crucial aspects of the disease are often neglected. Especially during the current COVID-19 pandemic, causing additional stress and anxiety, paying attention to mental health is very important.

Studies on mental health in DMD

Several studies have shown that mood disorders are often seen in DMD patients. Many factors play a role in the development of these behavioral and emotional problems. First of all, the absence of the dystrophin protein itself causes changes in the brain which can play a role (more information see the online program Duchenne and the Brain, and what is known from Duchenne and the brain in animal models).

Secondly, the use of corticosteroids that is recommended in the Standards of Care for DMD can impact mood and behavior. Furthermore, coping with the disease and its social consequences has an impact on the quality of life. Especially losing autonomy can lead to psychological effects, for example by causing social isolation.

Impact on families and caregivers

People often underestimate that DMD also has a substantial impact on the life of the patient’s family and caregivers. Taking care of a DMD individual has a large caregiver burden, affecting their daily life. Parents and caregivers are at higher risk for depression. This does not only account for the parents, also some siblings might also suffer from psychological problems. Lastly, female carriers experience mental health and cognitive disorders more frequently than non-carriers.

COVID-induced stress and anxiety

It is obvious that COVID-19 has a large effect on the mental wellbeing of the population in general and especially for people suffering from a chronic disease, like DMD. This not only stems from the disease itself, but also from the challenging circumstances caused by the current COVID-19 pandemic and the taken precaution measurements. Many patients experience social isolation, due to the discontinuation of daily activities and practicing self-isolation as they are a vulnerable group. This increases the level of stress and anxiety.

Social Duchenne

For this reason, several organizations promote programs directed to the social aspects connected to Duchenne and Becker muscular dystrophies. The Duchenne Data Foundation has therefore initiated a specific project. Social Duchenne focuses on psychosocial issues in DMD and a specific section for BMD. By using storytelling many topics are treated: independence, stress, inclusion, education, the impact of the disease on the family daily life.

Powerful experiences that are useful to other people of the Duchenne and Becker communities and to the civil society in general: everyone can find strength, inspiration, courage and a way to manage stress and anxiety by listening to someone else life.

The link between learning and behavioral challenges and dystrophin

Although certain neurological challenges can be attributed to the lack of dystrophin in the brain, mental wellbeing is a much broader topic that we can all relate to. Paying attention to the mental health of both patients and their families and helping them how to cope with this and to decrease the burden, is of utmost importance.

Additional reading

More information on how to manage stress and anxiety in these difficult times can be seen in these webinars:

  1. Online Program: Duchenne and the Brain
  2. How to manage COVID-19 induced stress and anxiety
  3. COVID-19, social distancing & quarantine: coping with stress & anxiety