My niece is being tested for cEDS , she has been to a geneticist and they did bloodwork and the hyper mobility test on her and she did fairly on that ( she couldn’t put her hands flat on the floor without bending her knees).
I’m really excited for this seres of yours! I know about hEDS, cEDS, and vEDS, but know nothing about any of the other subtypes. Looking forward to learning! Would you consider doing videos like this about each type of POTS?
Wow! Thanks! According to this I not only likely have classical (thought was hypermobile), but probably from my birth mother. She has the pseudo tumors, too. First place I’ve seen all the info. I’m coming off my 18th ortho surgery. I shredded my gluteus medius to dust when I made a quarter turn in the middle of my living room floor. My most spectacular, but hardly only, dislocation. Hundreds of subluxations all over my body. I’ve bruised like a peach all my life. Double vision, possibly from loose ligaments. Lots more. Not fun. And my godson’s daughter was just dxed with hyper mobile or classical, with marfanoid symptoms, from her mother. Nightmare. Keep it up, thank you!
I have cEDS, Thank you for doing this video! Mine is the COL1A1 gene that caused mine. My mother had Osteogenesis when she was alive and it shares the same genetic mutation with cEDS. My biggest struggle with cEDS is mobility issues and POTS along with wounds that take longer to heal, and Chronic Pain as well as subluxation and dislocation of joints. I bruise easy also.
Thank you so much for your video. I have probably 95% of those symptoms. I can’t wait to get tested. Invisible is right. One of the most painful things about this is that people don’t believe me. My family thinks I’m just lazy. I have so many things mucked up in my body. My medical records are full of all my issues, yet people still don’t believe me.
