Hi there- Do you think you have EDS/HSD, or vascular EDS specifically? I have HSD (hypermobility spectrum disorder), but I'm very borderline on the diagnostic criteria between hEDS and HSD.

It is challenging to get it diagnosed because at least in my experience, it's something that many providers consider "outside the scope" of their practice. There are specific diagnostic criteria for each type, and there's genetic testing for every type except hEDS (hypermobile EDS) and HSD. If you're interested, you can find the diagnostic criteria here: https://www.ehlers-danlos.com/diagnostic-criteria/

In my situation, it took years to find a provider willing to assess and consider a diagnosis, but I had PTs who recognized at the very least that I had hypermobility (except they're not qualified to give that type of diagnosis). There are various specialty clinics across the country, but long waiting lists =/ Ultimately, I got into the EDS Clinic and Mayo Jacksonville. I got the diagnosis, but my experience accessing care there has been very mixed, though most everyone was kind.

Do you know how your nieces were diagnosed; maybe that could give you a lead?