Well, it's official, GirlWho has Ehlers-Danlos. Yup. Having her diagnosed as a child should hopefully prevent her from being in the position I'm in, and it seems that she's not quite as hypermobile as I am, which is a good thing. She will get modifications for PE under a 504 plan. I'm not sure how that will work yet.
I'm glad we followed our gut instincts and kept her out of gymnastics and soccer - she's supposed to stay out of contact sports and she's to avoid bearing her weight on her her shoulders. Also, no throwing, so softball and such is out. The doctor recommends swimming for her, but not competitive swimming, which is how I first injured my shoulder as a child.
She's taking it all in stride. We explained to her long ago that she might well have EDS and that learning about it now would be hugely beneficial. She has also seen that I have been improving, albeit with really hard work, so she knows that she has a certain measure of control over her physical condition. She's being quite a trooper. But she's knows she's not "average." Or "normal." It kind of bugs her that she can't walk into a store and buy shoes - we both wear very narrow shoes, which is actually a feature of our condition (EDS may be related to Marfan's, and shares characteristics, including long, narrow limbs and feet.) And now she won't be doing regular PE, and he PE teacher is a bit of an asshole who fancies himself to be a drill instructor. DaddyWho may have to regulate.
We'll see. We have a conference in a few days. I'm just glad she has a diagnosis now, instead of when she's 27, like me. I just assumed everyone hurt all the damned time.