WORLD DUCHENNE AWARENESS DAY
Every year on September 7th, World Duchenne Awareness Day recognizes newborn boys that live with Duchenne Muscular Dystrophy (DMD). It’s also a day to spread awareness for this genetic disorder.
Throughout the world 1 in 5,000 boys are born with Duchenne Muscular Dystrophy (DMD). This genetic disorder is characterized by progressive muscle degeneration and weakness. Alterations of a protein called dystrophin cause muscle degeneration. Dystrophin is the protein that’s responsible for keeping muscle cells intact. For those who have DMD, this protein is also missing in the brain. This means that children with DMD often have learning difficulties and behavioral issues.
Girls can also be carriers of this disease but are only mildly affected. The disease more commonly affects boys. DMD also affects boys more severely.
Common symptoms of DMD include:
- Frequent falls
- Trouble getting up
- Difficulty walking and running
- Abnormal gait
- Large calf muscles
- Learning disabilities
- Heart problems
There is no cure for DMD. The only effective treatment for DMD is corticosteroid therapy. Daily treatments of prednisone help to increase muscle strength and function. Prednisone also slows the progression of muscle weakness.
Certain types of therapies can also help manage symptoms. These therapies include range-of-motion exercises, braces to keep muscles stretched and flexible, and the use of mobility aids, such as wheelchairs and walkers. When the disease begins to weaken the respiratory muscles, oxygen therapy may be necessary.
Thanks to these types of treatments and therapies, the life expectancy of those born with DMD has increased over the years. At one time, boys with DMD would not be expected to see their teenage years. Now, however, those with DMD will most likely reach their 30s, and possibly even their 40s and 50s.
HOW TO OBSERVE #WorldDuchenneAwarenessDay
The best way to participate in this day is to learn all you can about DMD. If you know someone with DMD, encourage them to tell their story. Donate to the World Duchenne Organization. You can also become an advocate for those with DMD and help spread awareness for this disease. Be sure to share this day on social media with #WorldDuchenneAwarenessDay
WORLD DUCHENNE AWARENESS DAY HISTORY
The first diagnosis of DMD was made over 150 years ago. However, it has taken many years to understand the impact of this disease on the individual with DMD, as well as their family. To improve awareness, Elizabeth Vroom and Nicoletta Madia launched the first World Duchenne Awareness Day in 2014. Both of them are active members of the World Duchenne Organization. Since then, the day has become a worldwide movement with participants from across the globe.