I wonder if I was to write a blog about my genetic disorder and the day-to-day frustration of living with a disease that most doctors have never heard of, if anyone would read it?
A few months ago, a twenty-year-old hockey player died after he went on a protien diet. He had the same kind of disorder as me, but no one knew and then he died. It’s stupid because doctors don’t screen for the disorders because they don’t understand them, don’t know what they are and then people die. And it frustrates me sometimes because nobody wants to listen when it doesn’t affect then, but it could.