The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne. The free event on September 7 will be accessible for everybody via Zoom, and is available with live Spanish interpretation.
On September 7, the World Duchenne Organization is organizing a live event from 14:00 to 16:00 Central European Summer Time. During these 2 hours, various experts will share their experience and knowledge on adult life with Duchenne. Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and Hlawulani Mkhabela. Apart from these, Duchenne adults from different parts of the world will share their experience of living with Duchenne.
Adult men living with Duchenne
The number of adult men living with Duchenne Muscular Dystrophy (DMD) is growing bigger every year. This can largely be attributed to better medical care, such as supportive ventilation and the use of preventive (cardiac) medication. These men want and deserve to live their lives to the fullest. This means they have the right to receive adequate care, have opportunities to live independently and to participate in society.
However, the medical profession and society are often not ready to facilitate this. While knowledge of optimal care for pediatric patients has expanded considerably and the organization of care has improved for this group, there are no care guidelines so far for the adult men.
Only very few studies are being done to gain evidence on optimal care. Care is often fragmented and there is a lack of specialized medical teams/centers for adult DMD care. In addition, educational institutions and employers are often not equipped with the necessary facilities and support systems, and too many facilities are just not accessible, leading to extreme frustration.
Although the first papers describing the challenges as seen by this group were published more than 15 years ago, and since then documentaries have been produced and workshops held on these topics, a lot of work still needs to be done to improve the situation for adults with DMD around the globe.
“On September 7 during World Duchenne Awareness Day 2021, we ask you to act and start or accelerate activities to provide appropriate support and improve accessibility. By doing so, adults with DMD can indeed live their lives to the fullest, receive adequate care, and be given the opportunity to live independently and to participate in society.” – says Elizabeth Vroom, chair of the World Duchenne Organization.
The event will be held in English with an option for simultaneous interpretation into Spanish and Ukrainian. The online event will be accessible to everyone who registered. The event will be recorded and the video subsequently made available.
Apart from being of interest to caregivers and people living with Duchenne MD, the event will be of particular interest to clinicians and other healthcare professionals, employers interested to hire people living with a disability, and government institutions.