I have all the classic symptoms.
Fragile, "velvet", translucent skin
Slow to heal
I am 24, I was told in passing by a Doctor I had this, 6 years ago.
I've been to so many doctors. Even at NYU's Hospital For Joint Disease (after they told me they could help), I basically keep getting told that they're sure I have it, but no Doctor knows enough about it to feel comfortable giving me a written diagnosis.
I can't find any Doctor locally, or even in a nearby state.
I'm only getting worse. My dislocations are getting more severe and having longer lasting effects.
My pain level is at the point I can barely function. Even going out once a week is a process.
ANY info. ANY, would be helpful.
I've joined the ED forums/site...but have only ever had issues logging in and I hate to say it, but they haven't been to helpful resolving it with me.