Hi Paula, I’m sorry to hear that you are having to try to figure all of this out yourself! I think many of us fear Vascular EDS, but in reality, it is rare. Most people have a clue by their family history of vascular events, or they have a specific LOOK (or phenotype). They have sparse hair, thin lips, thin and pinched nose, and almost transparent skin — you can often see most every vessel through their skin. I don’t believe it is usually necessary to test for Vascular EDS without that “look” and with no family history, but if it needs to be checked, there is genetic testing for it! You can get a solid answer for that type of EDS. I hope all goes well for you! Gentle hugs, 🙂 Dr. D