Duchenne Muscular Dystrophy Awareness Week is observed from February 13 to 19 every year across the country. This week is set aside to raise awareness about Duchenne muscular dystrophy, a severe form of muscular dystrophy caused by a genetic defect. People suffering from the condition experience weakening of their skeletal muscles that break down over time, resulting in them being unable to stand up or move around. Despite being the most common type of muscular dystrophy, there is insufficient awareness among the general public about the prevalence of the disease and potential treatments. Duchenne Muscular Dystrophy Awareness Week was created to address this lack of awareness and support people with the disease.
History of Duchenne Muscular Dystrophy Awareness Week
Duchenne Muscular Dystrophy Awareness Week is observed across the country in an effort to raise awareness about this rare genetic disorder that is one of the most common kinds of muscular dystrophy.
Muscular dystrophies are a group of rare genetic disorders that affect the neuromuscular system. Individuals suffering from these disorders experience progressive weakness and eventual breakdown of their muscular system.
These disorders are caused by mutations in the genes, which produce muscle proteins. They may be inherited from the parents or occur during the developmental stage when the child is a fetus. Duchenne muscular dystrophy (D.M.D.), in particular, is caused by a mutation of the gene for the protein dystrophin, and the disorder is named after the protein.
D.M.D. causes muscles to break down and die, and eventually get replaced by connective tissues and fat. It usually begins in the muscles of the thighs, pelvis, and calves, and eventually works its way up to the shoulders, neck, and arms.
This disorder primarily affects men and develops early on. Symptoms like difficulty rising from a prone position and difficulty walking are noticeable around the time a child becomes five years old. The disease progresses steadily, and individuals with the disorder are effectively paralyzed from the neck down by the time they’re 21. In rare cases, there are manifestations of this disorder that are non-musculoskeletal, in which case the neurological system is the most affected.
Duchenne Muscular Dystrophy Awareness Week timeline
Charles Bell, a Scottish surgeon, is among the first to identify and describe the breakdown of muscles as “muscular dystrophy.”
The French neurologist Guillaume Duchenne gives a comprehensive account of the most severe version of muscular dystrophy in a medical journal, and the disorder is named after him.
Lewis and the Muscular Dystrophy Association start a telecast that ran annually on Labor Day to raise funds for muscular dystrophy disorders.
The MD Care Act is signed into law in America, which ensures that research would be done into muscular dystrophy disorders.
Duchenne Muscular Dystrophy Awareness Week FAQs
Is Duchenne Muscular Dystrophy fatal?
While people may live for a few decades, D.M.D. is eventually fatal.
How do you prevent D.M.D.?
If D.M.D. runs in your family, getting genetic counseling before having children can help you understand if your children will develop the disorder.
How old is the oldest person with D.M.D.?
The oldest person with D.M.D. is about 54 years old and lives in the Netherlands.
How to Observe Duchenne Muscular Dystrophy Awareness Week
Spread the word
The most important thing to do during the week is to spread information about the disorder. Encourage people to get their children tested, and share information about the potential treatments.
Donate to a fundraiser
Funds are essential to continue much-needed research in D.M.D. and other muscular disorders. The research helps identify causes for the disorders and treatments, so donate to them!
Support someone with D.M.D.
If you know someone suffering, or their caregivers, lend a helping hand. Make them a meal, or take some yard work off their hands so they can have an easier week.
5 Important Facts About Duchenne Muscular Dystrophy
There is no cure
Like a lot of genetic disorders, there is no cure for D.M.D. — physical therapy, surgery, assisted ventilation, and gene therapy are some potential treatments to manage symptoms.
It can shorten life expectancy
The average life expectancy for someone with D.M.D. is 26, though some can live into their 30s or 40s with care.
The disorder is rare in girls
The disorder is so rare in girls that it only occurs in about one in 50,000,000 female births.
Women carry the gene
The disorder is X-linked recessive, which means that in cases where the disorder is inherited from the parents, the mother is the carrier of the mutation.
Gene therapy might help
Some studies have shown that gene therapy improves muscle strength in children, but there are no conclusions about the long-term effects.
Why Duchenne Muscular Dystrophy Awareness Week is Important
We feel for those suffering
A genetic disorder that destroys the muscles sounds really scary. We feel for those who are suffering, and we want to make sure that more people know about the disorder and its treatments.
We want to help
There isn’t a lot we can do if we aren’t researching the disorder directly. But we want to help in any way we can, from raising awareness and funds to helping out our neighbors.
We want to contribute to research
We think that raising awareness is a great way of supporting researchers. Research helps ease the lives of people with the disorder by identifying treatments, and we hope someday they will also find a cure.
Duchenne Muscular Dystrophy Awareness Week dates