The rather touchy article about Duchenne Muscular Dystrophy’s effect on those with it.
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This article took me a while to think about since it is a subject that kinda touches close to home. This wasn’t the big reason why that would be that I thought it wouldn’t be an interesting topic. Yet, sitting at a fundraiser designed for medical research for Duchenne Muscular Dystrophy, I thought “what the hell” and began this article.
This article is designed to raise awareness for this condition, as well as help keep minds open to those around you.
Duchenne Muscular Dystrophy or DMD is one of the many forms of Muscular Dystrophy that affects the global population. It is considered a rare disorder, but it is the most common form of muscular dystrophy in males.
It is caused by a genetic mutation that prevents the body from producing dystrophin. That’s a protein that protects and stabilizes muscle fibers according to the Genetic and Rare Diseases Information Center.
Without that protein, the body replaces it with fat. Eventually, it prevents an individual from function properly. Slowly shutting down all muscles, especially the heart and lungs.
Dystrophin also affects neurological development. Many that have DMD have mental problems that affect development, memory, and emotion.
The landslide of symptoms from this condition leads us to the biggest fault of this condition. Life expectancy from this condition ranges from 20s to 30s, so a short flame of life.
I am among those with this condition. While my symptoms are on the milder side of the spectrum with a fully functioning brain and slow progression, it still means that I will eventually die from my muscles failing.
For the majority of my life, I have tried to avoid the discussion of this matter. For starters, I have a fragile ego that hates weakness. Funny how the guy with muscles weakness distance physical weakness.
However, it is also a crutch for me to avoid the elephant in the room. Talking about my shorter life expectancy scares me to no end since there is so much I want to do before I reach the grave.
These reasons are rather pathetic since I could raise awareness of the condition or actually do something about misconceptions of those with physical disabilities. Which brings me to the reason I am writing this article.
Sitting at a CureDuchenne event, hosted by hockey player Ryan Getzlaf on Saturday, I got the idea for this article. Maybe I should take the opportunity to discuss my condition.
Even with the countless negative things I can spout about my condition, the important things are not that rant. The important facts are that people are living longer with this condition due to medical research and people willing to donate to help these kids. That I am a mostly functionally adult that can raise awareness for this condition.
Even with the demons or hardships we all face, we still are all people trying to make the most of our lives. No matter what we due, we will pursue the best course of action.