For zebras diagnosed and undiagnosed, wanted to ask what are the pros and cons of a hEDS diagnosis? I am currently on the fence about pursuing a diagnosis, and I am not sure what i should prepare if i were to go straight to a geneticist too. Currently im managing well without a diagnosis because I am aware i likely have hEDS, and have managed my symptoms early on by finding an appropriate healthcare team. I am still afraid to explore my other issues with a cardiologist/neuro because well….its scary finding a new doctor of any sort. I am frustrated though because i want to get more involved in helping out with research, speaking up and advocating for this population. But for more educational platforms, you do require a formal diagnosis. So i feel limited with regards to what I can do without one. And also, i think a formal hEDS diagnosis would help when I see new doctors, so i dont need to go over the long process of getting them to believe me. And sometimes i do wonder if im just a hypochondriac too. Anyone with any similar past dilemmas? Would love to hear from you all :’)

Posted by Deleted (ade58139) at 2022-07-26 14:54:20 UTC