Over 60 organisations from around the globe marked the fourth annual International Myotonic Dystrophy Awareness Day as part of the Global Alliance for Myotonic Dystrophy Awareness.
Held on 15 September, the day is dedicated to raising awareness about myotonic dystrophy (DM), a complex and often misunderstood genetic disease that affects thousands of individuals and families worldwide.
It is a progressive, inherited disease that affects muscle strength, respiratory systems, heart function, cognitive abilities, and more. Because the disease is so complex, myotonic dystrophy is often misdiagnosed and poorly supported. By uniting efforts to raise awareness, the Global Alliance seeks to shed light on the challenges faced by those living with the condition and to enhance understanding of the disease worldwide.
Michael Walker, chair of the Board of Trustees of the Myotonic Dystrophy Support Group based in the UK, said the day amplifies the voices of those who live with the condition.
“It is a chance to educate the health professionals, especially those in primary care, the local Members of Parliament, and the public, about the urgent need for better care, research, support, and understanding of the condition. Our collective efforts are vital in improving the lives of individuals and their families affected by this challenging condition,” he said.
With no current cure or disease-modifying treatments available, raising awareness and fostering research are crucial steps toward improving the lives of those impacted by this condition.