One in 3,500 newborn boys in the world is affected by a rare and fatal disease: Duchenne Muscular Dystrophy (DMD). One in 3,500 might seem a drop in the ocean but including their family members, the daily lives of millions of people around the globe are affected. Duchenne Parents have set up organisations in their countries, and all of them work day by day to guarantee access to care, to improve research, to educate patients and families.
Like last year everybody will raise awareness and money for education through Duchenne Balloon.
This years’ campaign will be focused on Early Diagnosis programs: identifying and communicating early signs of Duchenne muscular dystrophy globally is the key to Early Diagnosis.
‘Although some studies show a slight improvement in the age of diagnosis of DMD there continues to be a delay – on average 2 years- in presentation to a health professional and a delay in obtaining a CK test after parents have seen the first signs. To reduce these delays, neonatal screening for DMD would be instrumental but is so far only available in very few countries. Early recognition of the obvious signs is the best instrument we have at the moment. Delayed gross motor milestones, gower’s sign and delayed speech should raise a red flag and be followed up by a CK test as soon as possible. Besides giving parents the opportunity for good parenting, an earlier diagnosis of DMD will allow timely access to genetic counselling, standards of care and clinical trials.’
Early Signs of Duchenne Muscular Dystrophy
Duchenne parents tell why Early Diagnosis is important
Pope Francis and the European Parliament support World Duchenne Awareness Day
What is Duchenne Muscular Dystrophy?