Seeking hEDS Diagnosis: Should I Trust the Specialist?

I agree genetic testing is a good idea if you can do it. I have an hEDS diagnosis because nothing showed up on my genetic testing to indicate another subtype. However please keep in mind more genes that play a role in EDS are still being discovered for all subtypes. Due to the emergence of new symptoms since my genetic testing 2 years ago my hematologist is concerned I may have vascular EDS not hypermobile. My genetics doc (I’m in the US and my doc was in Florida at university of Miami genetics) recommended I be retested every 5 years as medical research into EDS and genetics as well as technology for genetic testing evolves.

hEDS is often considered a default diagnosis when genetic testing isn't done but a patient exhibits symptoms of EDS. Many of us would love to be offered genetic testing, myself included, to have the peace of mind that other EDS subtypes are genetically ruled out, as many of them have quite dangerous characteristics that need to be monitored. If I were you and it was in my capabilities to get to London for a diagnosis, I would do so. Being seen there by specialists can also mean that they will coordinate with your local providers to come up with a treatment plan.