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Which advice would you give to someone who has just been diagnosed with Glycogen Storage Disease?
See some advice from people with experience in Glycogen Storage Disease to people who have just been diagnosed with Glycogen Storage Disease
With type 3 don't be overwhelmed and don't believe everything you hear. Most doctors have never heard of it or if they have, they have never treated anyone with it. Do your research and talk to many people who deal with it. Then formulate your own plan and go with it. You are your best advocate and will know your situation better than anyone!
Posted Mar 1, 2017 by Shelly 1000
Cutting sweets is very important. The sugar in them is very dangerous to GSD. For advice on the specific type, I would read this article by David Weinstein, a researcher in the field: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7442342/. It's a long article, but it helps a lot. Just remember that GSD research is constantly evolving and other recommendations are also being tried out.
Posted Jun 12, 2022 by Th3 250
Translated from spanish
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Give trabquilidad. It is a disease with the q you can live by following the guidelines. Not only diet but medications...
Posted Mar 11, 2017 by Pepa 1000
Translated from portuguese
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It is a diagnosis for the whole life. Requires support from family members and the health services. Be aware that it is possible to treat and nourish the hope and expectation in the development of the science with new drugs, drugs that facilitate the entry of the enzyme into the cells and to bet on gene therapy.
Translated from portuguese
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Never give up
Wait for new advances coentificos
Wait for new advances coentificos
Posted Sep 24, 2017 by Welton Correia Alves 1000
Translated from portuguese
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It is likely that she is a child and may not have the size that it will face in life because the disease is commonly diagnosed in early childhood, I give it to the parents so that they are the support of this child, it will be difficult, but you must never lose hope that now they have a warrior in the family and that everything will be all right. She will be or will look normal, and will be happy.
Posted Oct 14, 2017 by Jakeline Serafim Vieira 1010
