While assuring medical assistance for people living with Duchenne Muscular Dystrophy (DMD) is extremely important, all aspects of everyday life of those living with the condition and their families are heavily impacted. Access to a full life, education, psychological support, work and activities is an important issue that people living with DMD and their families are dealing with.
The Survey
Through the Social Duchenne project, an online survey in the form of questionnaires was conducted to determine the impact of the condition on the daily life of those living with DMD and their families/carers.
The survey received 30 responses, from patient organizations from 26 countries in Europe, Australia, Asia, and North and South America. The data collected presents the needs, challenges, and the reality of people living with DMD and their families.
The survey was organized around 6 major pillars of everyday life:
1. Psychological support
In many countries, psychological support is included in the care plans for people living with DMD. Psychological support is extremely requested and in many cases, it is provided by non-profit organizations.
2. Rights
In most cases, extra equipment (wheelchairs, house adaptation) and cars are provided to the family after the diagnosis. Many families are also able to profit from financial support.
Where financial support, medical equipment and extra services are not included in the support plan, it is mostly due to lack of funds.
3. Family
The main caregiver in the families is the mother, and most of the families report distress and difficulty when dealing with the diagnosis. For adults with Duchenne, the concern for the future and their isolation from their peers is the most important issue as they arrive to adulthood. The majority of the parents report issues when trying to balance work and care for their child.
4. Accessibility
Accessibility is still not assured in the majority of the countries considering public infrastructures, sidewalks and public buildings. This could lead to exclusion and isolation.
5. Work
The preferred professional activities for people with DMD are those that can be performed in front of a computer, such as IT and communication.
6. Independent living
Independent living is not supported in many countries. In countries where it is implemented, it is initiated by non-governmental organizations.
Results of the Survey
Whether it is accessibility to school and work, psychological support, accessibility to activities, work and independent living, the needs of people living with DMD and their families are not always acknowledged and addressed properly by the society.
Awareness
Increasing awareness through communication campaigns, and creating relevant events and activities, are identified as an effective way to inform the public and the government bodies on the challenges that people living with DMD and their families are facing on a daily basis.
Contact
For more information on the survey and the Social Duchenne Project, please contact the Coordinator of the Social Duchenne project, Nicoletta Madia: [email protected].