あなたはちょうどグリコーゲン貯蔵病と診断された人にどのアドバイスをしますか?

グリコーゲン貯蔵病で診断されたばかりの人々に対するグリコーゲン貯蔵病の経験を持つ人々からのアドバイスを参照してください

元の


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!

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