Is there anyone on here that has Ehlers-danlos syndrome that is willing to talk with me? My granddaughter, whom I have custody of, has been referred to a Rheumatologist for an evaluation of Ehlers-danlos. I am at a complete loss of what to expect and what type of questions I should be asking. I am not very good at researching online and only come up with definitions of what it is and some symptoms. Any help and guidance is greatly appreciated! Her evaluation is September 7th.