CCRox Wrote:I had never heard of this. Sounds so serious compared to your positive attitude about it. Thanks for explaining! As a type I diabetic it sounds like a cousin disorder...
Hey there CCRox,
My situation was much more serious when I was a kid. These days I'm able to maintain my condition, to an extent, by being responsible and remaining consistent. Unfortunately, not everyone in my position is as lucky. The only other person I ever met who had GSD died when I was nine (he was seven). Part of the danger is that there is such a narrow window of time to keep the glucose levels up. Within about thirty minutes of not drinking the cornstarch when I'm supposed to, my blood sugar will drop to the teens, which as you know, hypoglycemic or hyperglycemic, is a terrible, death impending, feeling. There's been several occasions where I've gone to sleep at night only to wake up weeks later in the hospital because something went wrong with my feeding pump. But that hasn't happened in a while.
I was lucky because my mom was very diligent in keeping me healthy, thus instilling good habits in me as an adult, which is surprisingly not as common as it should be from what I understand.
Interestingly, without the tubes in all the time (thus without people constantly staring and asking questions) I kind of forget that I even have this disease. It's kind of like living dual lives
.
It is a lot like a cousin to type 1 diabetes. But in a way, it's also like the polar opposite too. I'm never sure about exactly what the rules for consuming sugar are for diabetes (you can't eat much of it, but sometimes you have to eat a lot of it?) but I can't consume and sugars whatsoever. That's any of your uses: sucrose, lactose, and fructose. No fruit for me. With GSD your liver lacks the enzyme to convert glycogen back into glucose, therefore, any sugar I consume just stores in the liver forever and begins to impede liver function (that's why it's called glycogen storage disease).