World Duchenne Awareness Day is observed every year on September 7. An initiative by the World Duchenne Organization, this day aims to raise awareness about Duchenne and Becker Muscular Dystrophy. Caused by mutations in the dystrophin genes, these are devastating genetic conditions that produce symptoms such as learning disabilities, frequent falls, waddling gait, and many more. It significantly impairs one’s ability to function normally in their daily life. This day shines a light on what it is, how it affects our lives, and what we can do about it. It also equips us with the right knowledge needed to care for someone suffering from this condition.
History of World Duchenne Awareness Day
The Duchenne Muscular Dystrophy, also known as D.M.D., was named after Dr. Duchenne de Boulogne. This was because he was one of the first to report a case of D.M.D. and went on to study it in depth for years after that. In addition to describing the progressive muscle weakness in D.M.D. patients, he also discovered the connection between the muscle and the brain and concurred that D.M.D. also resulted in the impairment of the brain in its patients. It was his findings that brought this information to light for doctors in other countries.
Nearly a century later, Dr. Eric Hoffman and Dr. Louis Kunkel found that D.M.D. was caused by mutations in the dystrophin gene. Initially, there was only basic care provided for D.M.D. patients and the only option upon diagnosis was to ensure they were loved and looked after at home as there was nothing that could be done medically. In certain cases, non-invasive ventilation was used and this use of respiratory support increased life expectancy greatly.
Cardiac abnormalities were usually treated when they became symptomatic, but since 2007, an increasing number of individuals have been treated with ACE inhibitors as a preventative measure. The use of ACE inhibitors as a preventative measure is now part of the current standard of therapy. D.M.D. is a rare but dire genetic disease and since 2014, September 7th of every year has been dedicated to the awareness of it. World Duchenne Awareness Day is observed worldwide to let everyone know what D.M.D. is and what we can do about it.
World Duchenne Awareness Day timeline
Dr. Duchenne de Boulogne reports one of the first cases of D.M.D.
Dr. Eric Hoffman and Dr. Louis Kunkel find the missing protein associated with D.M.D.
Non-invasive ventilators increase the life expectancy of D.M.D. patients.
Elizabeth Vroom and Nicoletta Madia declare the first-ever World Duchenne Awareness Day.
World Duchenne Awareness Day FAQs
What does D.M.D. generally entail?
Duchenne M.D. is a rare genetic disease defined by muscle weakness wherein the muscles get weaker over time. This also affects the ability to breathe as well as the function of the heart, as the heart is a muscle too.
How do you diagnose D.M.D.?
For an early diagnosis, look out for delayed gross motor milestones, Gower’s sign, and delayed speech which should raise a red flag and be followed up by a C.K. blood test as soon as possible.
What is the life expectancy of D.M.D.?
With the current standards of care, the average life expectancy of those with Duchenne M.D. is the early 30s and beyond. However, due to cardiac complications, several D.M.D. male patients, who are in their late teens, pass on with the disease.
How to Observe World Duchenne Awareness Day
Learn more about D.M.D.
There is much to learn when it comes to what the disease is and how it affects the patient, their caretakers, and loved ones. Take this day to become aware of D.M.D. and its various aspects and help spread this awareness further.
Participate in W.D.A.D. online
You can participate and share your support online and help reach a wider audience by updating your profile picture to one with the W.D.A.D. balloon. You can also repost banners on different social media platforms and help disseminate the official press releases for the day.
Contribute to Duchenne Awareness
Donate to one of the many organizations that are set up for the support of D.M.D. patients and their families. You could even volunteer and donate your time and effort by helping organize and execute events and activities to raise awareness about D.M.D.
5 Facts About Duchenne Muscular Dystrophy
There’s a reason behind the date
W.D.A.D.’s date (7/9) stands for the 79 exons in the Duchenne gene.
The muscle-brain connection
The protein that is missing in the muscle is missing in the brain as well.
More common in males
Every year, one in 5,000 newborn boys has D.M.D.
The red balloon
The symbol for W.D.A.D. has been the red balloon since 2014.
Awareness is key
The lack of awareness of this is a major factor in the diagnostic delay.
Why World Duchenne Awareness Day is Important
It raises much-needed awareness about D.M.D.
There are innumerable patients and families affected by this disease that face a unique set of challenges every day. Raising awareness about the disease will help improve their lives and generate better help and resources for them.
It reaches out to stakeholders
By expanding the reach of this awareness campaign, more and more stakeholders are engaged and educated. This creates room for more efficient strategies to be adapted for the disease and to help those that live with it.
It helps to find homes
A very important objective of this day is to encourage potential parents to adopt those with D.M.D. Those living with this disease are deserving of love and care as much as anyone else and families that have the resources to help can change their lives and give them a place to call home.
World Duchenne Awareness Day dates