Hi all! I'm located in the US in a major metropolitan area. I'm currently waiting on genetic testing results for hereditary connective tissue disorders to come back in the next month or so, but the geneticist did fill out the EDS Society checklist saying I fulfill the hEDS criteria. My care plan prior to seeing the geneticist was mostly regarding individual organ systems, not joints or autoimmune conditions. I am now having mild as well as concerning joint issues. A lot of my lifelong medical issues were not caught because my family normalized them (genetics, wow!), doctors dismissed me, and I pushed through pain and fatigue. I'm still employed, I leave the house almost every day, my life is fairly independent, I don't use mobility aids and don't see myself using them any time soon, but I'm easily fatigued.

I'm not sure what type of specialist I should be seeing to handle my overall care as a person with a connective tissue disorder (specific diagnosis pending). I'm concerned with prevention of worsening issues, finally finding the link between all my separate conditions and connective tissue disorder, watching out for development of related issues, and the possibility that I may have autoimmune conditions on top of everything.

What kinds of specialists helped manage your overall care as a person with EDS? Do you have to see an EDS specific doctor, plus a bunch of other specialists for non-joint related issues? What kinds of doctor arrangements do you have? Is there even a single doctor who could help in the way I'm looking for, or is that a pipe dream?
What kinds of specialists have been unhelpful for you? This can be either in terms of the entire specialty, or the individual doctor's characteristics.

Also, what should expectations be for care and doctors going forward after diagnosis?

Thanks y'all, I appreciate the camaraderie!