What is MD?

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A coworker of mine who recently came upon my blog made a very good point the other day about a lot of my posts. He asked me what “MD” stood for.

I write my blog with the probably mostly incorrect assumption that people have been reading along from the beginning, so I just started to abbreviate MD instead of spelling it out. But that’s not how blogs work. Yes, there’s probably a group of followers who have been there from the beginning (a big thank you to those people!), but there also might be  new people who have never read this blog before that happen upon a random post. Not necessarily one that explains what MD is. So I wanted to take this opportunity to explain what MD is in a general sense, and then a brief overview of what it means for me.

MD stands for “muscular dystrophy”. The medical dictionary describes muscular dystrophy as:

A group of genetic diseases that cause progressive weakness and loss of muscle mass.

There are a ton of different kinds of muscular dystrophy. Some I didn’t even know about as someone with the disease. Most of the types of muscular dystrophy are progressive which means that people who have the disease have gradual muscle and strength deterioration. This is the “dystrophy” part in the name. It also can cause immense amounts of pain. In the case of Duchenne’s muscular dystrophy, the disease is often fatal. From the handful of people I’ve met with muscular dystrophy, many times people are born with a normal level of strength and don’t even know they have muscular dystrophy until later in life when they notice their strength levels waning.

My particular type of muscular dystrophy is known as central core myopathy. I talk a lot about the day-to-day effects of my disease, but I rarely talk about the actual physical and scientific aspects of it. I basically have little holes in the center of each of my muscle cells so my entire body is much much weaker than the average person. My type is also very very rare. I’ve only encountered one other person with it (as a result of this blog actually). When I was born, the doctors said I would never walk on my own. I had braces on my legs, then graduated to crutches and a walker. With the help of physical therapy, I actually got to a point where I could walk totally on my own and have been ever since. I was diagnosed when I 2 years old when my mom noticed I wasn’t trying to walk or even pull myself up. So I’ve know almost my entire life that I’ve had muscular dystrophy. Doctors also don’t think that my particular type of muscular dystrophy is progressive either, meaning hopefully my muscles won’t weaken as I get older.

I’m certainly not the foremost expert on muscular dystrophy (MD) so I encourage everyone to read up from much more accredited resources. MDA can be controversial in our community, but it’s helped me a great deal throughout my whole life and their website has a lot of very valuable resources on learning more about MD:

https://www.mda.org/disease

photo credit: Leo Reynolds question mark via photopin (license)

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3 thoughts on “What is MD?

  1. I am curious about what makes the MDA controversial in your community, Jackie. I am fairly new to the team, and thus far my experiences have been nothing but positive. I am acquainted with a chemist who voiced to me concerns pharmaceutical developers have about the strength of their advocacy “pushing” drugs to market (his term). That was a fascinating conversation from a perspective I’d never considered. But other than that, I have not heard anything. Feel free not to respond if you’d rather not. I don’t want to be nosy, but I do want to keep reading your stories. Thank you for your voice here.

    1. It’s really weird. I’ve used MDA most of my life, from the time I was 2, and had nothing but positive experiences. But on the social media sphere people have complained about them not being helpful, they’ve had some events that weren’t accessible (which is pretty dumb) and I’ve heard that their perspective on disability and what it means is negative. That’s the jist of what I got out of the anti-MDA convos.

  2. Hi. I may be your one as a result of the blog but if not there are 2 now.
    🙂
    To my knowledge I am the only one in my state (that is registered with MDA.

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