My niece was just diagnosed with this today. Do I remember correctly that there are others on here whose kids have it? I have hypermobile joints, and my kids have some other related symptoms (especially digestive). Just wondering where to go next (if anywhere).

You are in the Seattle area, yes? I was diagnosed at the UW genetic medicine clinic. I would recommend going there.

My kids went to Mary Bridge in Tacoma. They were great too.