I'm so close to meeting the diagnostic criteria for HEDS but just barely miss it because of my religious fundamentalist family's disbelief in doctors.
I have the hypermobile joints, the recurrent joint pain, and 4/12 of the one section. That one extra point is all I'm missing. And I'm so close to making that even. I have a hiatal hernia but it's never been repaired for it to be able to recur, and I have papules on one foot but not the other. And I've never had my heart scanned to know if I meet those and can't afford to do so. And if my dad's side of the family weren't crazy ass Pentecostals, I'd have the family history, assuming this is the condition I have. The worst part is I WAS ALREADY DIAGNOSED. AS A CHILD. WITH THIS OR WHICHEVER CONNECTIVE TISSUE DISORDER I HAVE. My mom just didn't want me to be weird or like my dad so won't tell me what it is if she even remembers by now.
I saw the road to 2026 thing, so I'm just hoping when the time rolls around there'll be other symptoms considered as part of the diagnostic criteria that would allow me to be diagnosed. Or conclusively rule it out so I can explore other options. I don't know exactly what to do but assuming I don't have heds I think I'll see about getting genetic testing to hopefully see what's wrong with me or at least rule things out. I'm just anxious about the timing because it says December 1st and if my Ortho doctor ends up saying I need to see a geneticist or someone else, I'm not sure I'll be able to get an appointment with them in time for insurance to cover it. I have a high deductible plan so when the new year rolls around it'd be considerably more expensive.
I'm mainly ranting here but if anyone has any advice that's always welcome.