Now We Know

Now we know I have Becker Muscular Dytrophy. A small amount of relief as you would expect having 6 years of thinking there was something wrong, now to be told there is something wrong. Lets just say it was a very, very small amount of relief mostly I was quite upset. With the information about this new condition being thin on the ground and well most of it going in one ear and going out the next. I was set for quite a few years of turmoil before coming to terms with the news.

I am not the only boy in my family, I also have two brothers who had to find out they also had this condition and a sister with a chance of being a carrier. There's a word you will find me using to describe Becker Muscular Dystrophy, that word is "condition". You would think with BMD being a muscle wasting disease, I would use the word disease. When you mention the word disease to the small of mind, one of the first things that comes to mind for them is "I wonder if I can catch it". Also using the initials MD causes confusion with the first question being "Is it like MS".

One of the first things to deal with is how to tell people you have this condition. Over the years I have discovered explaining how it effects you first ie "I suffer from a condition which effects the construction of my muscles". Going further into details the best you can usually promt's the person you are telling to ask "what is it called". You can then land them with the name they haven't heard before.. Becker Muscular Dystrophy.
The most important thing is do your research, in the early days armed with conflicting information I told people all sorts of facts about it sometimes really quite wrong. It was quite easy to paint the picture of doom and gloom when armed with the information on what the end result of suffering from the condition involves.

Once you are happy you have the facts and and deliver them in a clear way, you find people will become quite interested in the facts of how it all works. Now I could prattle on about the facts of it but I wont so have a search on the internet for the information. When I first found out information was all in books and in the minds of doctors but now its all over the net..
So google it will you