Hi Colleen, Thank you for your well needed information. And as per your question , no she is not under the care of a physician with expertise in Ehlers-Danlos syndrome....;o( They are hard to find and up to this point had been holding her own s0-t0-speak. And as per rehab...it has been a journey for sure!! She is getting OT/PT however, has had 2 more events that led up to being unresponsive-not remembering anything ...and sent to Er only for them to release back to facility with no answers or even the desire to find some. She still has paralysis on left side that seems weaker with each event. I am trying to get an outside neuro consult for her, however like going through fort Knox since she is considered under "there" care at the rehab facility. I did get an ortho consult, but ortho said not ortho and needs neuro. I will read the site you offered...thank you again. Have a good day.