您有什么建议可以提供给先天性结缔组织发育不全综合征(Ehlers-Danlos综合征)的新患者?

查阅其他先天性结缔组织发育不全综合征(Ehlers-Danlos综合征)患者给予先天性结缔组织发育不全综合征(Ehlers-Danlos综合征)新患者的建议

原本


Do as much research as you can. Go to as many doctors as you can and try to find a doctor who knows about EDS. Someone who really knows. Not a doctor that asks you what EDS is.
Don't be afraid to try new things, such as k-tape, braces. Try things that might help you. Each case is different, each person is different. Since there isn't much information yet about EDS, and since there are so many different types and collagen can affect us differently, don't be afraid to try braces or whatever to make you feel better.

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