先天性结缔组织发育不全综合征(Ehlers-Danlos综合征)患者的生活。如何与先天性结缔组织发育不全综合征(Ehlers-Danlos综合征)共存?

先天性结缔组织发育不全综合征(Ehlers-Danlos综合征)患者是否可以过正常的生活?先天性结缔组织发育不全综合征(Ehlers-Danlos综合征)患者应该如何保持乐观?先天性结缔组织发育不全综合征(Ehlers-Danlos综合征)可能会影响您的日常生活,但您必须保持乐观。看看其他病患如何抱着乐观的态度与先天性结缔组织发育不全综合征(Ehlers-Danlos综合征)共存

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Oh man, this is hard. I am in constant pain since I was 15 years old. That's almost 7 years with pain. But am I happy? I think so. But that has nothing to do with EDS. I am happy despite EDS. Although I must say, there are days when I am in so much pain and despair that in those days I don't consider myself that happy. Pain is here with me everyday. Constant pain. Not easy, man.

I don't have any advice. The worst thing someone can tell me is "at least is not cancer". I'm not saying that I have cancer, or that EDS is worst than cancer but how can they even compare?

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