Suspecting EDS: Seeking Diagnosis and Community

there's only no genetic test for hypermobile EDS which is the most common form, but there's a criteria you go through and if needed they rule out other types of EDS and also other types of connective tissue diseases/disorders such as Marfan's. Most known and noted forms of EDS now have a genetic marker at least that I'm aware, and hEDS is on its way to having a link after YEARS of research. If youve already been diagnosed as hypermobile you could see about getting into a geneticist. But if you're not positive you're going to pass the systemic criteria due to lack of evidence or diagnoses it's best to wait as unfortunate as it is, it would be a waste outside of getting their opinion on the matter and finding out what they see, especially if they can do an EKG and Echo. There's so many doctors outside of that bouncing around for years you may see finding out what's going on before you potentially get a Dx if you can't pass the criteria right now.

On the Ehlers-Danlos Society website and in other research-based sources on EDS, I’ve actually seen more information saying that hEDS and HSD (hypermobility spectrum disorder formerly known as hypermobility syndrome) can be equally as debilitating / disabling and that some cases HSD can be more severe than some cases of hEDS and vice versa. You can have a ton of hEDS/HSD comorbidities (like POTs, fibromalgia, osteoporosis, gastroparesis, etc.) and have heart issues, prolapses, but still not actually meet ALL of the many hEDS criteria and therefore be diagnosed as HSD instead. That’s why both conditions are treated on an individual basis but with essentially the same range of potential treatment options for both. Wanted to share this because it’s potentially dangerous to perpetuate the misinformation that hEDS “causes more problems” than HSD when that is not always the case at all. Also, anyone reading this please fact check me vs. information on the official EDS Society website! (ehlers-danlos.com)