Today, Duchenne Data Foundation launched a new website called Social Duchenne. This project aims to highlight psychosocial issues in people affected by Duchenne or Becker muscular dystrophy (DMD and BMD).
Inclusion and empowerment
The project started in 2019, when project initiator Nicoletta Madia wanted to address social issues in the field of DMD and BMD. “We have been collecting materials from patient groups for a while, and it is so nice to see that we can share these powerful stories. We had our first gathering during Duchenne Patient Academy, and the stories that emerged from the groups were amazing. I’m happy we are addressing this issue and we will continue to develop materials to help families cope with this”.
Social Duchenne aims to highlight psychosocial issues in Duchenne muscular dystrophy through educational materials, information and storytelling. Educational activities are hosted to the Duchenne community to address specific needs and topics, and provides guidance on how to deal with social and psychological issues in daily life.
The second part of the project is to educate the civil society, Nicoletta says. “It puts people in the condition to listen, stimulate closeness and help in better communication. When we speak about living with Duchenne or Becker, we also talk about inclusion, independence, human rights, equity, education and opportunity”.
About psychosocial issues in Duchenne and Becker
The Duchenne Family Guide states that being affected by DMD/BMD can bring many psychosocial issues along. How these challenges look like, differs per stage of the disease and age of the person affected. Since loss of dystrophin also occurs in the brain, people with Duchenne or Becker have a higher chance to have learning and behavioural challenges. This can be having difficulties in impulse control, anger, having mood swings, difficulties in keeping focus or remembering things. Use of medication such as steroids can play a role in this.
In the late ambulatory stage, which mostly occurs in late childhood or adolescence, extra attention is needed to cope with loss of strength in physical and emotional ways. Both the person affected and the carer can benefit from receiving support. In young adults and adults with DMD or BMD, education and life goals play important factors in the physical wellbeing. Living an inclusive and independent life with Duchenne or Becker requires additional support and interventions.