The ONLY thing you need to know about Muscular Dystrophy

The only thing you need to know about muscular dystrophy: MD is an umbrella term, not a disease.

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I’m sure you’ve heard of Jerry’s Kids or the MDA Telethon. Maybe you know someone with Muscular Dystrophy. Or, maybe you’re new to the Muscular Dystrophy convo.

 

I’m here to clear a few common misconceptions up.

 

The only thing you need to know about Muscular Dystrophy is that there are over 40 types of MD, meaning MD is an umbrella term for all those different types of disabilities.

There is a large misconception that Muscular Dystrophy is it’s own disease, when in reality it’s an umbrella term for several types of muscle weakening diseases. Certain types of MD can appear to be similar, but at the end of the day, they are all unique and affect each individual differently. Within certain types of MD, there are different types of the specific disease. I know that was wordy, let me explain.

I have a type of MD called SMA (Spinal Muscular Atrophy). When I’m talking about my disease I almost never say, “I have MD,” which I see a lot of people do. This might be a contributing factor to why it’s confusing to people that MD doesn’t stand alone. I have SMA, which is a type of MD. Within SMA there are a few different types, I happen to have type II — the mediocre type. You can’t just have MD; you can have a type of MD.

 

MD can affect anyone, as most types are genetically inherited. I say most because another misconception is that they ALL are genetically inherited.

Maybe you’ve heard of the greatest physicist of our time, Stephen Hawking.

This brilliant man had a type of MD called ALS. ALS falls into the MD umbrella, and that particular disease’s origin is still unknown. It’s theorized that it could be genetic, but there’s no solid proof on how people acquire ALS. While certain types of MD share the commonality that they are inherited, the mechanism of inheriting the diseases are different. SMA is an autosomal recessive disease that affects the SMN gene — this is very specific to SMA. Otherwise, everyone with MD would be able to benefit from the newly FDA approved drug called Spinraza that is treating SMA patients. But, it can only treat SMA because of SMA’s unique genetic structure.

 

With that being said, even people with my specific disease, SMA, are affected very different. Our bodies are unique and several factors can dictate how a disease affects you, such as access to healthcare. I’m tired of seeing these misguided articles about Muscular Dystrophy and certain diseases that make it seem like they’re all the same. Let’s stop making generalizations about MD, SMA, and disability in general.

 

Every disability is different and effects people’s lives differently, even if they have the same type of disability / disease.

 

We all have a thumbprint that makes us 1 in a .... billion. (What’s the world’s population, again?)

 That’s why we need to love our genes <3

If you are interested in learning more about MD, visit www.mda.org

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Alex DzimitowiczComment