I have a similar disease called CentroNuclear Myopathy. I have described this
here. I was first diagnosed having a Muscular Dystrophy. But as the time goes by, the diagnosis was changed when I undergo a biopsy operation. These kinds of diseases only affects males.
The bad thing on having these type of diseases is you will not be able to use general anesthesia. You can only use generic ones which can only last for less than an hour I think. Because general anesthesia is bad for the health on anyone who have this.
I still remember on how painful undergoing on a biopsy without an anesthesia. You could feel how they cut your muscles. I cried out loud when I undergo it. I think I'm just 5-6 years old back then.