Wednesday, 7 September 2016 is annual World Duchenne Awareness Day (WDAD). The Muscular Dystrophy Association organises the international day of awareness for the most common and life-limiting form of Muscular Dystrophy, Duchenne.
Red is the recognised colour of WDAD, and this year’s theme is early diagnosis. On the evening of 7 September, iconic buildings and landmarks around Australia will be ‘shining their light on early diagnosis’, by projecting a red light onto the buildings.
In the Hawkesbury, Council will help to raise awareness by shining a red light onto Hawkesbury House, Windsor, and Hawkesbury Leisure and Learning Centre, Richmond.
The significance of the 7th day of the 9th month was decided because there are 79 exons in the dystrophin gene – this is the gene in which any mutation is responsible for causing this progressive muscle weakening condition, affecting thousands of Australian males (and in all countries), at a rate of one in every 5,000 males.
Shining the light on a rare disease, even a common one like Duchenne, begins with diagnosis. Some boys (and rare girls) are left undiagnosed until six or even eight years of age, by which time strengthening treatments may be delayed and less effective.
More about Muscular Dystrophy:
Someone who is diagnosed with muscular dystrophy (over 60 kinds) will experience gradually increasing disability as muscles progressively lose strength and functional ability. This increasing weakness can lead to other health problems.
There is no cure for muscular dystrophy and no way to stop its progression.
Early tell-tale signs include: delayed speech, frequent falls, enlarged calves, waddling gait, Gower’s Sign (difficulty rising from floor), difficulty running, jumping and climbing stairs.
Although present at birth, symptoms of a neuromuscular condition may not appear immediately, becoming apparent at any stage from infancy to adulthood.
Through shared knowledge and information, WDAD aims to inform the community about Duchenne and early diagnosis. Watch out for these two iconic buildings in the Hawkesbury on Wednesday, 7 September, and talk to your friends and family about the cause and early signs of this condition.