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World Duchenne Awareness Day 2021

September 7 is World Duchenne Awareness Day. On this day, we raise awareness for Duchenne and Becker muscular dystrophy (DMD and BMD) around the globe.

An initiative coordinated by the World Duchenne Organization. Press release here

 

Produced by the World Duchenne Organization

The official promo video is initiated and produced by the World Duchenne Organization and coordinated by Nicoletta Madia. “Words are important. Words can help make a difference. This is the theme that emerges from the video for World Duchenne Awareness Day 2021. The video shows various portraits of people living with Duchenne in daily life. Three words are highlighted that means a lot to people living with Duchenne MD.”

  • Duchenne encompasses what it means to live with this pathology and the commitment of research and clinic in this field.
  • Community includes thousands of people globally committed to changing the quality of life of people living with this disease.
  • Awareness encompasses the importance of informing about this rare condition globally by reaching the greatest number of people. An objective that is at the center of this day and for which the World Duchenne Organization asks everyone to spread the word.

Video from World Duchenne Organization

 

Adult men living with Duchenne

The number of adult men living with Duchenne Muscular Dystrophy (DMD) is growing bigger every year. This can largely be attributed to better medical care, such as supportive ventilation and the use of preventive (cardiac) medication. These men want and deserve to live their lives to the fullest. This means they have the right to receive adequate care, have opportunities to live independently and participate in society.

However, the medical profession and society are often not ready to facilitate this. While knowledge of optimal care for pediatric patients has expanded considerably and the organization of care has improved for this group, there are no care guidelines so far for adult men.

Read more on their website here.

 

An online event on Adult Life & Duchenne

The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne. The free event on September 7 will be accessible for everybody via Zoom and is available with live Spanish interpretation.

 

Raising awareness

The official hashtag for the awareness-raising campaign is #spreadtheword. Everyone is encouraged to share this video with their friends and family to raise awareness for Duchenne and Becker muscular dystrophy.

 

About DMD/BMD

Duchenne and Becker muscular dystrophy (DMD and BMD) are two muscle-wasting conditions. Mutations in the dystrophin gene cause both. A certain part of the DNA is missing, duplicated, or changed, so the code cannot be read correctly by the body. This leads to the absence of the dystrophin protein, which plays an essential role in the muscle and brain. Without dystrophin, muscle cells easily get damaged, leading to a loss of these cells and, thereby, muscle function.

This can also happen in the brain, where dystrophin is missing as well. Where Duchenne individuals have a complete lack of dystrophin, people affected with Becker muscular dystrophy have lower levels or a shorter version of this protein.

 

Key facts

  • Duchenne and Becker muscular dystrophy are rare genetic diseases defined by muscle weakness
  • The dystrophin protein cannot be made due to an error on the X chromosome
  • Currently, there is no cure available for this fatal disease
  • Each year, 1 in 5.000 newborn boys receive the diagnosis of DMD
  • Lack of awareness contributes to an average delay of diagnosis of 2,5 years

 

Useful links