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4:11 am
June 7, 2010
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riversiene
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| Member | posts 7 | |
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My dad has been diagnosed with Pompe disease. I am shocked. The doctor tells me that this is a rare disease, and it is much rarer in adults. I'm afraid for my dad, as it is almost always fatal.
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5:30 am
June 7, 2010
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Gertie
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| Member | posts 12 | |
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This is the first time that I've heard of Pompe disease… What happens to you if you have it?
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9:13 am
June 7, 2010
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matthew
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| Member | posts 11 | |
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Post edited 1:14 pm – June 7, 2010 by matthew
Oh my, I am so sorry to hear about your dad. I have a friend whose child died of Pompe. It is when your muscles, including your heart just stops working.
For adults though, they usually have muscle weakness first and that progresses to respiratory weakness. This is where you should be strong as after the respiratory weakness, the patient often dies of respiratory failure that
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8:59 am
June 8, 2010
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Gluthatione
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| Member | posts 38 | |
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I agree that Pompe is a terrible disease. Babies die before they turn
one and only after their hearts enlarge and thicken. How old is your
dad? Usually if the disease appears later in life, the progression is
usually slow and that gives you a lot of time to treat it.
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6:58 pm
October 11, 2010
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Rene
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| Member | posts 213 | |
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Pompe disease is a glycogen storage disease. This rare inherited metabolic disorder is caused by an inborn lack of the enzyme alpha-1,4 glucosidase (lysosomal glucosidase; acid maltase), which is necessary to break down glycogen, a substance that is a source of energy for the body. This enzyme deficiency causes excess amounts of glycogen to accumulate in the lysosomes, which are structures
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1:13 am
January 30, 2012
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Peter454
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| Member | posts 5 | |
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It is really depressing to hear about your father. I have heard that this disease mostly occurs to infants. See a good doctor and yes Lumizyne can really be effective. DOnt worry, your father will be fine?
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6:58 am
February 2, 2012
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jonathantrott
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I am sorry for your dad, how is he doing now, is he okay now, I would suggest that you should take nurses continuing education so you can help your dad to cope with his disease.
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