Do you know what GSD is? Did you know that there are close to 10,000 people with this disease, very little research has been done, and there are no real treatments at this time? Thousands of children have already died...and I had absolutely no clue. Not one little idea that this even existed.
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Until I went to a fundings meeting the other night that my mother knew about. (Okay, I'll give you the basics but read all about it here, on the Feldman's non-profit groups' webpage.)
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GSD (Type 1a) is when a person cannot form glucose since they are missing a certain enzyme. Like diabetes, this can affect blood sugar levels to such an extent that thousands have died. Many parents do not realize their children have this disease since their is no test to find it and both parents have to be recessive carriers to pass it on. Parents have found out that their children have had it after sudden seizures and long hospital stays were luckily (sadly, "luckily"), a doctor has been able to recognize what it might be. And once a parent is told what it is, they realize that their lives will be changed drastically. If their child does not receive Agro Corn Starch (yup, straight from the supermarket shelves and proved to be the best therapy at this time) EVERY TWO HOURS, their blood sugar levels will drop to a dangerous level. And when I say every two hours, I mean that the parents have to set alarm clocks for the middle of the night to go put a mixture of water and corn starch through a tube directly to their childs' stomach just to make sure they stay alive. They can never be late by even fifteen minutes or their child could die.
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I cannot believe that I have never heard about this. They not only need donations to help fund the research...they need researchers! I hope that I have explained it well enough and that you will feel compelled to learn more about it...I know it will indirectly affect me for the rest of my life.
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