Need advice on EDS hypermobile diagnosis

I have Heds and the 2 separate rheumatologists were both very dismissive. I highly suggest looking online for doctors who specialize with EDS patients. Heds (to my knowledge at this time) still doesn't have a genetic marker unless one has been found in the last few months since they started doing research, so its tough to diagnose. I found my doctor on a list on an eds website, he only works with eds patients and athletes and thats it. I'd also suggest asking family members if any of them suffer from hypermobility. Unless they have been diagnosed with HEDS it won't definitely count towards your score for getting a diagnosis, but it can make it easier especially since it is genetic.

i'd also recommend a geneticist. scans are important but they're not necessary for a diagnosis (unless they suspect u have vascular ed's or something like that). the most important thing is to first get genetic testing and be evaluated with the brighton scale

Hello! I got my diagnosis from a geneticist, she did the Brighton Score and family history with me and ordered an ECHO of my heart to rule out vascular EDS.