“Holdaway has been pressing medical colleagues… and the Minister of Health to change their approach to the diagnosis and treatment of patients with Ehlers-Danlos Syndrome (EDS) & associated vascular compression syndromes”
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I've been trying to get a formal dx for POTS & hEDS. @clevelandclinic.bsky.social doctors keep telling me it's in my head. I guess that world-class care can make it to Abu Dhabi & London but not 100 mi south of Cleveland.
jul 8, 2025, 6:09 am • 0 0 • view
My daughter has been going through something similar over the last year. She has OCD, ARFID, HEDS, and POTS. I can’t tell you how many doctors we saw or had tests done until we found someone that took it seriously. So many times we were told her stomach issues were just nerves or anxiety.
jul 8, 2025, 5:26 am • 4 0 • view
ugh, so sorry :/
jul 8, 2025, 5:28 am • 2 0 • view
I’m glad you posted this cause it’s good to know we aren’t alone in going through something similar. I never even heard of EDS until this last year and now I frequently hear it getting mentioned by others. I guess it’s more common than I realized.
jul 8, 2025, 5:35 am • 2 0 • view