あなたはちょうど多発性骨端異形成と診断された人にどのアドバイスをしますか?

多発性骨端異形成で診断されたばかりの人々に対する多発性骨端異形成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


It's not as scary as it sounds! It is a jumble of possibilities in regards to what symptoms each person experiences, and it is not too well known resulting in minimal resources. Recent years have meant an increase in more widely available treatment options and better advances in technology. So if you need a back brace now-a-days, it is much smaller and less noticeable than ones like what I wore in the early 90s. Be honest with yourself and your limitations without adding unnecessary limits. Lastly, don't bottle what you feel about the whole situation up! Talk to people who can give you support. You do yourself no favors by remaining silent!

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