The main reason I speak out about Myotonic Muscular Dystrophy or MMD, is to bring it to the forefront of peoples minds. Little is known about this disease and few people have heard of it unless it has affected their family. If MMD is in your family linage it surrounds you. With an hereditary rate of 50/50 once it does strike a family it usually strikes hard. There is no cure for this multi systematic, genetic disease. Although it is a rare disease, it is the most common form of Muscular Dystrophy.
Talking about it is my way of doing something about it. I figure as long as I have it I may as well do something with it. I am unable to hide it, or pretend that it doesn't exist. It is very real, and it affects my life every single day. Research is being done for MMD constantly, yet the information we have about it will fit on a single piece of paper.
Myotonic Muscular Dystrophy can be broken down further into sub-types. Type I, type II type III (a relatively new discovery) and congenital. Congenital is of course the worse case scenario and it effects children. MMD type I is classic adult onset muscular disease. This is the type that affects me and my family. Some are affected more than others, but in almost all cases it is life shortening.
Muscle cramping, heart problems, breathing problems, extreme fatigue. cataracts, digestive problems, cognitive memory problems. These are just a few of the symptoms of MMD. I have had family members with most of the various symptoms, others have simply had early age cataracts and nothing more. Most of the symptoms can be treated to some degree as they come along, but the quality of life is defiantly affected. For me there is the extreme fatigue coupled with the general feeling of being unwell.
Never the less I try to make the most of my situation and my life. I can't fight MMD and the devastating affect it has on my family, but I can talk about it. I can help bring the disease and it's manifestations to the forefront of human awareness. I can teach people to think before they speak, and to understand that some illnesses and disabilities are not as easily recognizable as others.
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