Hey all! I just got diagnosed with EDS, type is still TBD pending insurance/bloodwork. My sibling has hEDS - they were diagnosed late last year. As children we were diagnosed with “unspecified connective tissue disorder”, as they could run all the visual tests to confirm, but final diagnosis (through bloodwork) was inconclusive.
I am a figure skater (yes I’ve been told it’s a dangerous sport for zebras, but I started long before the diagnosis and have found ways to accommodate my body while doing what I love) and also enjoy hiking when I can. I’m currently in pt for a skating injury, but lucked out and got a therapist who’s knowledgeable about sports and EDS. I’m planning to continue working with her on general stability once we get past this injury.
I also have granulomatous, a cyst sharing space with my cerebellum, Eagle Syndrome, possibly POTS (this is still pending diagnosis), I’m autistic, and have now had 2 doctors tell me I’m a “highly allergic person” (46 different allergies support this conclusion). I’m learning that my body functions better the less gluten and milk I have, but don’t count either as a true allergy/intolerance yet.
I can certainly go into more detail but wanted to offer a brief summary of my story/intro. I’m also open to suggestions for where to go from here (sweating smiling emoji).