Hi EDSlife,
That is a big question – what type of doctor. I am not sure where you are located but I would STRONGLY recommend just getting to the ‘top of the foodchain’ as far as doctors go. I, myself, have yet to pull this off for several reasons. It is, however, a huge goal of mine to get to the top; of the foodchain (as far as doctors) and quit the exhausting ‘are you my mother’ tail-chasing.
My genetic doctor dx me w/EDS though. The prob is that any specialist who doesn’t understand EDS and how it impacts EVERYTHING is really not such a good fit. I love my cardiologist and was careful to request one who specialized in genetic disorders due to my EDS – only to find that he specializes in congenital heart defects. There is a big diff in a congenital defect and a genetic disorder of collagen. Ugh! It’s a major struggle and that is why I recommend getting to the heavy hitters.
Clair Francomano, Paul Cheney, Hal Dietz, Pocinki, Grubb, etc. CHeck with EDNF or Marfan national support groups for doctors who would be familiar. SAve yourself years of phychological abuse by doctors and get yourself to where you need to be by seeing a doctor who understands.
Again, this information is hypochritical (coming from me since I’ve yet to accomplish following my own advice) but in my heart I know its best. If not for all of my current obstacles I would have already followed my own advice. Due to rarity of my situation, I have in the past sought treatment by the exact type of microspecialist (top of the foodchain) doctor that I mention – merciful God. Just now I am so bound by so many obstacles I cannot comply with what has been the proper decision for me in the past. I have yet to see the specialists whom I know would be in my best interest considering the current state of my health and the accompanying diagnoses.