World Duchenne Awareness Day 2023: World Duchenne Awareness Day is observed on September 7 each year. This day was created by the World Duchenne Organisation to raise awareness of Duchenne and Becker Muscular Dystrophies. These debilitating genetic conditions are caused by mutations in the dystrophin genes and manifest as cognitive disabilities, frequent falls, and other symptoms. It severely impairs an individual’s ability to function typically in daily life. This day illuminates what it is, how it impacts our lives, and what we can do to combat it. It also equips us with the knowledge necessary to provide care for someone with this condition.
DAY DEVOTED TO THE HISTORY OF DUCHENNE AWARENESS IN THE WORLD
Dr. Duchenne de Boulogne gave his name to the Duchenne Muscular Dystrophy, also known as D.M.D. This was due to the fact that he was one of the first to report a case of D.M.D. and then spent years studying it in depth. In addition to delineating the progressive muscle weakness in patients with D.M.D., he discovered the connection between the muscle and the brain and agreed that D.M.D. also led to brain impairment in its patients. His research introduced this information to the attention of physicians in other nations.
Nearly a century later, Drs. Eric Hoffman and Louis Kunkel discovered that mutations in the dystrophin gene caused Duchenne muscular dystrophy. Initially, D.M.D. patients received only basic care, and the only option upon diagnosis was to ensure they were cherished and cared for at home, as there was no medical treatment available. In some cases, non-invasive ventilation was utilised, and this use of respiratory support significantly increased life expectancy.
Since 2007, a growing number of people are being treated with ACE inhibitors as a preventative measure for cardiac abnormalities, which were previously treated only when symptoms appeared. As a preventative measure, the use of ACE inhibitors is now part of the current standard of care. D.M.D. is a rare but fatal genetic disease, and every year since 2014, September 7th has been dedicated to raising awareness about it. World Duchenne Awareness Day is observed globally to inform everyone about DMD and what can be done about it.
World Duchenne Awareness Day 2023: FACTS
- The date (7/9) of W.D.A.D. represents the 79 exons in the Duchenne gene.
- The absent protein in the muscle is also lacking in the brain.
- Every year, one in 5,000 infant males is born with D.M.D.
- Since 2014, the symbol for W.D.A.D. has been a crimson balloon.
- This dearth of awareness is a significant contributor to the diagnostic delay.
WHY DUCHENNE WORLD CONSCIOUSNESS DAY IS IMPORTANT
Every day, countless patients and families affected by this disease face a unique set of obstacles. Raising awareness about the disease will help to enhance their lives and provide them with more assistance and resources.
By broadening the scope of this awareness campaign, increasingly more stakeholders are engaged and informed. This creates room for more efficient strategies to be adapted for the disease and to assist those that live with it.
This day’s primary objective is to encourage prospective parents to adopt children with Down syndrome. Those with this disease are just as deserving of affection and care as anyone else, and families with the means to assist can transform their lives and provide them with a place to call home.
WORLD DUCHENNE AWARENESS DAY DATES