Writing what I don’t know – Muscular Dystrophy

I don’t know anything about muscular dystrophy other than what little I have read on the Internet, but I want one of my characters to have it. I wanted my character to have a disease that had an early onset, developed over time, and left the person more and more physically impaired. There were a few different diseases that fit the bill, but it looks like I will probably use muscular dystrophy.

Since I don’t know anyone that has muscular dystrophy, and I have no experience with the disease myself, the difficult part is writing it in a way that won’t cause more harm to people that already suffer under the burden of the disease. Not only do I want to write my character in a way that I cheer for them, I want people that have muscular dystrophy to be able to see themselves in the character and be proud of their strength and accomplishments.

I hope that I don’t end up embarrassing or disappointing myself or the people that live with muscular dystrophy.

I expect that I will be writing about congenital muscular dystrophy.

One thing that I already learned is that there are a plethora of types of muscular dystrophy. It is almost like it is an umbrella term used to describe the symptoms of the disease instead of the disease itself.

From the Wikipedia entry on muscular dystrophy:

In the 1860s, descriptions of boys who grew progressively weaker, lost the ability to walk, and died at an early age became more prominent in medical journals. In the following decade, French neurologist Guillaume Duchennegave a comprehensive account of thirteen boys with the most common and severe form of the disease, which now carries his name—Duchenne muscular dystrophy.

It soon became evident that the disease had more than one form. The other major forms are Beckerlimb-girdlecongenitalfacioscapulohumeralmyotonic,oculopharyngealdistal, and Emery-Dreifuss muscular dystrophy.

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Marisa

I am a writer of words, a thinker of thoughts, a changer of genders, and a queerer of life. I am an antagonist of the ordinary; and while I do tolerate it, I also look at it with contempt.

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