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?

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Write everything down.
If you suffer from widespread issues write down each issue. It makes it easier to deal with each problem. You can also ensure you see the right person.
At appointments take notes som you don't forget things to. You can be given a huge amount of info at adornments which can be easily forgot when you walk out the door.
Most importantly you are not alone, they're are thousands of others who were in you pave once and we're happy to listen

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