Yes, you read the title right. My future husband has a congenital muscular disease; it will never go away. There is no cure, and every day is a battle. When my fiancé was in his teens, he was officially diagnosed with Myotonia Congenita (my-UH-tone-EE-ya con-jen-EE-tah) This disease is a very rare form of muscular dystrophy and stems from the neurological family, meaning that it not only affects the muscles, it affects the nerve endings. Why are you saying he is an “X-Men?” might have crossed your mind. Well, this happens due to a mutation caused in his genes, just like the X-Men.
Remember hearing about those fainting goats a while back? Well, they have Myotonia! The “Myotonic Goats” have the rare muscular disease and at random moments, their bodies stiffen up completely, causing them to fall to the ground. When my fiancé was younger, he was playing basketball with some friends. As he was dribbling the ball, going for a throw, his body did the same exact thing, causing him to fall flat on his face. At the young age of seven, he had no idea what was going on, and this was his first memory of Myotonia.
My fiancé is not alone in his journey. His two older half-siblings, his father, and his fathers’ sisters all have Myotonia. But my fiancé's younger full-sister did not inherit it. There are two types of Myotonia, Thomsen (Autosomal Dominant) and Becker (Autosomal Recessive). The difference between the two is that Thomsen only means that one parent is a carrier while in Becker means both parents are carriers. My fiancé has Thomsen Myotonia Congenita; his mother is not a carrier of the disease. All of this information and you might be thinking, "gosh, is this intense!" Well it truly is, and I have only begun to scratch the surface of his disease.
While this is meant to inform you on very rare diseases that are extremely real, I am writing this because I love my fiancé. I fell in love with him while I was trying to understand what this disease is. Some days are harder than others, and some are just plain terrible. The pain he goes through just trying to get out of the chair after sitting long is hard to watch, but I have gotten used to it. Seems harsh? It isn’t, the worst thing I could do is coddle him. Anyone who is married to, loves, or is related to someone with an incurable muscular disease, or anything else along those lines, knows that we need to be here to support them and not continually remind them of what ails them. I won't lie, the first few months were hard, and after we moved in together, it got harder. I have learned how to live with, and love, his disease.
sources:
https://en.wikipedia.org/wiki/Myotonia_congenita
http://www.webmd.com/children/myotonia-congenita
