Hi. I live in Florida and am looking into getting an appointment at the EDS clinic in Jacksonville. I don't have an official diagnosis yet, and understand that there is no definitive "test" to diagnose EDS. I had genetic testing done through Sequencing and have the genetic variant associated with hypermobile EDS. I've mentioned the condition to my dermatologist and she said she remembers reading "a paragraph" about it when in school, but she did have a friend that died from an aortic aneurysm; she had vascular EDS. It's a shame that there are not more doctors that are familiar with or treat this condition. I'm 57 years old and look and feel much older due to the joint pain, arthritis in my low back, and skin laxicity. I would love to have one specialist that treats all the conditions that are caused by EDS. Hopefully the EDS clinic at Mayo will be a good start. And I am more than willing to participate in clinical trials if it helps others in the future. Best of luck to you!!