The Timeline for DMD Is As Unique as Your Child
As a newly diagnosed family, one of the most discouraging and frightening aspects of the diagnosis was not knowing what to expect and when to expect it. We found doctors were hesitant to provide a specific framework for the disability because DMD manifests itself differently in each boy. That was about 14 years ago.
There are, in fact, general timelines of what to expect with DMD. Just because this chart indicates ranges, doesn't mean your child will fit this model.
Remember, Mitchell's life was cut short at least 10 years from premature heart failure. By the time most young boys detect mild to moderate cardiomyopathy, Mitchell was already in end-stage heart failure. So there are no hard and fast rules, but, by and large, this timeline should give you a general sense of what to expect and it is true of many young boys.
A Short Documentary on Duchenne Muscular Dystrophy by PPMD
Duchenne Muscular Dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births. Ongoing improvement in medical care for boys and young men with Duchenne has led to a new patient population emerging over recent years. It is crucial to stimulate and further develop dialogue on how to improve transition processes in this emerging population and on how to maximise their quality of everyday life. Besides progression in muscle weakness, there may be brain involvement as well. Therefore we are calling on everybody who watches this short film to 'let's put our brains together to support brain research'.
A short compilation of the documentary "Duchenne With A Future: The Power To Live". A film about the success factors of living an adult life with Duchenne Muscular Dystrophy. For more information on Duchenne or the documentary: http://www.parentprojectmd.org
Exact timelines for your child are unknowable, but this general timeline can provide a basic sense of what to expect through the years.
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We made this video for High School Students to help them imagine what it would be like to be diagnosed with DMD. Helping teenagers perform a thought experiment, inviting them to imagine what life would be like with DMD helps them better attend to the needs of their fellow classmates who are diagnosed.
See PPMD's Stages of DMD Content
More content can be found in the Caretakers Guide to DMD Presentation
COMING SOON, AN ANATOMICAL VIEW: WHAT HAPPENS AND WHEN
As a newly diagnosed family, do you have specific questions about DMD?
Here are a list of support resources from PPMD:
PPMD has also assembled an amazing list of resources and helpful links. You can find those resources here.