hEDS, the disorder I have, is somewhat controversial like PANS is. the symptoms include hypermobility (overly flexible), spontaneous joint dislocations, widespread pain, joint degeneration, easily damaged skin, fatigue, immune dysfunction and tachycardia. ~2% of the population is hypermobile, but healthy, and don't have those symptoms. hEDS is known to be heritable, but the genes haven't yet been identified. many doctors conflate hEDS with healthy hypermobility, and don't take it seriously.
I realized on my own that I met the criteria, but the first few doctors I saw wouldn't listen to me, even after my arm popped clean off my shoulder. now I have an excellent care team, but it took me a couple years of fighting to get a diagnosis.
I realized on my own that I met the criteria, but the first few doctors I saw wouldn't listen to me, even after my arm popped clean off my shoulder. now I have an excellent care team, but it took me a couple years of fighting to get a diagnosis.