Clair Francomano, MD, was at Human Genetics, Johns Hopkins Human Genetics in Towson/Baltimore. She diagnosed me with EDS several years ago. She’s at the University of Indiana now. She may be able to advise you.
I would check out the Johns Hopkins Human Genetics clinic n Towson.
I feel your pain and frustration it took many, many years to get a diagnosis. Even now many doctors are skeptics until they get me in the surgery room and see how my shoulder and hip dislocate with just a little shove. Then they use me as a teaching tool!