This was exactly what I needed right now--thank you!! I'm waiting on genetic testing, just had an echo, but haven't gotten to some of the other steps (or knew what they were for that matter). The PT videos on YT suggestion is awesome as it's something I can work on while I wait. And I just joined a FB support group. Also, I super appreciate that you added #7. Thank you so much for this 😊
I have cEDS and I have had bloodwork done as soon as I told my Neurologist that my mom and sister have Osteogenesis because cEDS shares the same genetic mutation with OI. I was going to PT but after COVID hit I had to stop, hopefully my Neurologist will get me back in PT. And I’m apart of the EDS Society’s group. I am trying to get more exercise in my daily routine and I want to try to eat healthier ( hopefully my family will help me with that). Thank you, I feel the same way: EDS is ONLY A PART OF ME, NOT THE WHOLE ME!
im actual shocked i have an appointment with clinical genetics. was told they dont usually see most people, but my symptoms plus a family history of hypermobility must have intrigued them lol (dad has been diagnosed with hypermobility but he left it at that since he isnt a fan of doctors)
