It's not well understood at all in the U.S., and my dr said that since there is no treatment, she wasn't even interested in testing me. I've seen support groups, but mostly in Europe, where it is treated more. It is also associated with Ehlers-Danlos Syndrome, which has several sub-types. There is a Facebook group for this.
From what I understand, your joints do degenerate more quickly and there can be more pain. Some people use braces for support.
I'm sorry I couldn't be more helpful! I hope you'll find good info, and if you do, please do share.
Keiki's Makuahine (Keiki's Mom) 51, dh 52
Keiki: b. 2002 after 3 months bedrest
Natural conception following ZIFT/chem. pg
Olivia: b. 1999 d. 1999
28-week preemie, ptl cause unknown
Natural conception after 1 mc
ttc since 1998