Duchenne Muscular Dystrophy is a degenerative condition caused by a mutation on the DMD gene, which is responsible for the production of dystrophin, a protein that helps muscles recover. Duchenne is a complicated disorder leading to various myths or misconceptions about those living with it. Below are often 3 myths people may have about Duchenne, and some further information about each one in addition to some further information about each statement.

  1. DMD only affects males 

While it is true that DMD does affect around 1/5000 males there is an even more rare chance of it affecting females. Duchenne typically does affect boys as due to the X-chromosome linked recessive pattern passed from the mother. However, there are some extremely rare cases in which a female will have Duchenne that follows the typical pattern of boys with the condition. You can read more about the various ways in which this happens, along with the work and understanding being gained in regards to females, carriers and Duchenne via this resource.

  1. Physical disability often means intellectual disability

This is false! In fact, this does not only go for DMD, but for many people with disabilities. It is important for people to recognize that just because an individual’s body doesn’t physically work as it should, doesn’t mean that they’re brain is affected in the same way. When speaking to a person with a disability, specifically an adult, it is in everyone's best interest to speak to that person as you would any adult. Making assumptions about intellect solely based on physical appearance can be offensive and frustrating. 

Early on, a variety of developmental delays may lead to a Duchenne diagnosis. But it is vital to remember that the word delayed is defined as “happening at a later time than expected.” Although, at young ages, DMD patients are often slower in reaching developmental milestones, it does not mean they will never reach them. It is important to remember that even though those with Duchenne may be physically slower, their mind is often just as sharp and unique as one living without Duchenne, as stated above. Yes, it has been found that Duchenne can affect the brain in various ways, and there are often differing cognitive disorders and challenges related to the disease. However these same disorders are found in those without a physical disability and it is important for one to not assume that someone living with a physical disability does not have their own thoughts, opinions, and ability to learn and share their knowledge and skills. If you care for someone with Duchenne, consulting your neurologist and team for assessing cognitive abilities and challenges is recommended. Assessing challenges is not meant to scare parents or limit the patient, but rather help find ways for them to be successful and reach their full potential.

Check out our blog series on several individuals living with a variety of rare diseases who are making an impact in our world with their careers:

Terry Horgan’s Career with Duchenne

Overcoming Obstacles: Building a Successful Career in an Inaccessible World

10 Disabled YouTubers You Should Subscribe To For Learning More About Life With Disabilities

Navigating Entrepreneurship and Motherhood While Battling SMA

Finding Career Motivation in a Rare Disease Diagnosis

  1. DMD patients should not exercise

The truth is actually the opposite - appropriate types of movement are helpful and important to those living with Duchenne. Stretching is a crucial form of movement and exercise that is recommended for those with Duchenne.. It is always important to consult one's doctor and/or physical therapist when navigating what types of exercise are appropriate, as Duchenne does vary from one person to another. Recently there have been studies done on the various types of exercise that are showing to be beneficial to those with Duchenne. You can read more about those findings via this resource.