Duchenne Muscular Dystrophy Awareness Month

Posted on February 15, 2018 by kerri

A few years ago at Stanford Medicine X, I met a guy named Terry Marlin. Terry has two sons who have Duchenne Muscular Dystrophy, and tirelessly advocates for people with this form of muscular dystrophy, DMD. Because of Jonah and Emory, Terry started the Fight DMD Foundation, to help the 1 in 3500 boys born every year with DMD. [1]

A Lego stormtrooper pushing another stormtrooper in a wheelchair.

What is Duchenne Muscular Dystrophy?

DMD is a progressive muscular disorder and is one of 9 different types of muscular dystrophy. [2] Symptoms start between the ages of 3 and 5—typically muscle weakness affecting the hips, pelvis, thighs, and shoulders, followed by the muscles of the arms, legs and torso. [2] Children with DMD often fall a lot or appear “clumsy”, or may walk in a way that compensates for their muscle weakness. [2] Eventually, often around age 10, kids with DMD will need to use a wheelchair at least part time, and often will need to use a power wheelchair to accommodate the weakness of both upper and lower body muscles. [2] Eventually, muscle weakness can impact the lungs, heart, and about a third of the time, children with DMD also learning/mild intellectual disability that affects attention as well as ability to communicate what is actually known—often, the effects on the brain, learning, and thinking are specific to people with DMD. [3]

Typically, DMD affects boys, but it does in rare cases affect girls. [2] It is a genetically linked disorder, known as a “dystrophin gene mutation” [2].  How the disorder is passed down, via a father’s Y chromosome (which only boys have) and a mother’s X chromosome, means that girls who do get the disorder via two affected X chromosomes, one from each parent, mean the disorder is often less severe in girls. [4] (Check out the Muscular Dystrophy Association’s website to understand more about how genetics of DMD work.)

Treating DMD

While DMD is characterized as a fatal disease, medical advances are allowing more and more men with the disease to live into their 30s, and at increasing rates, to their 40s and 50s. [2] Medical management of DMD includes controlling symptoms using medicines like steroids. While many treatments including asthma medicines, vitamins, amino acids and minerals are often used, there is no research advocating their usefulness. [5] Exercise programs, physical therapy and speech therapy are often useful to improve symptoms and quality of life. [5] Medicines to treat heart problems or acid reflux, orthopedic braces, wheelchairs, and social support are also often used to help manage Duhenne Muscular Dystrophy. [5]

Living with DMD

If you are living with DMD, it may be helpful to wear a medical ID bracelet or necklace so that responders are aware of your condition and treatment in an emergency if you are unable to communicate. For kids with DMD who may have speech delays or have trouble speaking or communicating, a bracelet or medical ID necklace for Duchenne Muscular Dystrophy may help parents feel more at ease when they send kids out into the world. Our selection of custom engraved medical ID jewelry gives a lot of choice—and can provide a lot of peace of mind.

To learn more about DMD and the Marlin Family’s story, check out FightDMD.com.

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