My Neurologist is the one who diagnosed me with Classical EDS. It shares the same genetic mutation with Osteogenesis which my mom had , however EDS runs in my family also. My niece is also being diagnosed with EDS, she has a genetic appointment next month to confirm what type it is. Her Pediatrician is the one that noticed it in her. He had me go get bloodwork done and I know that it was in 2021 of January that I learned about it. He had the test done and then a while later I had to go back to see him and that’s when I saw it on my paperwork.
thank you so much for uploading! this answered so many "pre-questions" I had, and I have a much better understanding of the role of different tests and specialists.
My Neurologist is the one who diagnosed me with Classical EDS. It shares the same genetic mutation with Osteogenesis which my mom had , however EDS runs in my family also. My niece is also being diagnosed with EDS, she has a genetic appointment next month to confirm what type it is. Her Pediatrician is the one that noticed it in her. He had me go get bloodwork done and I know that it was in 2021 of January that I learned about it. He had the test done and then a while later I had to go back to see him and that’s when I saw it on my paperwork.
thank you so much for uploading! this answered so many "pre-questions" I had, and I have a much better understanding of the role of different tests and specialists.
Very informative thank you.
Saw this today: If you're a hEDSer and you know it clap your feet!