I am also new to this website and newly diagnosed May of this year with Classical Type Ehlers Danlos Syndrome. Welcome to the other side of diagnosis. I know how horrible and scary it is on the other side with no answers that seem to make sence, while you just get sicker. Diagnosis for me was like all the pieces of my life fitting together and I was able breath and know that I am not alone in this fight. You now have so many people out there who know what you are going threw and that is priceless. Still the medical community is largely unaware of what a patient with Ehlers Danlos Syndrome might look like. We don’t usually go in complaining about stretchy skin and joints popping out? I will say a prayer for your next appointment in Chicago . My best advice to you is study about your illness as much as physically possible. Print info for every doctor you see. Lol I printed a 41 page presentation that Diana wrote for my eye doctor. Last week. I even made him go over what tests were done like three times to make sure. My eyes were dilated so I couldn’t do it myself lol you had to be there. Missed a few so I have to go back.