- World
- Sep 07
World Duchenne Awareness Day on September 7
• The United Nations observes World Duchenne Awareness Day on September 7.
Duchenne muscular dystrophy
• Duchenne muscular dystrophy (DMD) is a rare progressive disorder.
• People with DMD are missing muscle-protecting protein.
• This is due to a fault in the gene producing dystrophin.
• Muscles become weaker over time until it affects the whole body. It is caused by a mutation on the X-chromosome, that is why mainly males are affected.
• First walking becomes difficult, then other motor functions follow and ultimately it affects the ability to breathe as well as the function of the heart, as the heart is a muscle too.
• The missing protein also has a function in the brain, so learning and behavior issues can also be part of the disease.
• In most countries, the average age of diagnosis of DMD is above 4 years of age and the diagnostic delay is around 2.5 years. Parents see symptoms much earlier and some symptoms are already visible when the children are very young.
• Duchenne muscular dystrophy is named after Dr Duchenne de Boulogne, who was one of the first to report the disease in detail in the 1860s.
This year’s theme
• This year’s theme is ‘Family: the heart of care’.
• With this year’s theme, the day highlights the role of family members for people living with Duchenne and Becker muscular dystrophy.
• Living with Duchenne muscular dystrophy is a journey marked by both physical challenges and emotional resilience.
• At the center of this journey is family. The love, support, and daily involvement of family members play a vital role — not just in caregiving, but in shaping the quality of life and emotional well-being of those living with DMD.