What tests, if any, did you undergo to confirm your diagnosis of EDS?

[ehlersdanlosuk]

[ClassicalGirl Administrator]

I was clinically diagnosed i.e. physically examined by a doctor, after my mother had been genetically diagnosed by way of a skin sample.

[missteal]

I didn't know you could be genetically tested for this :/ I've been diagnosed with hypermobility syndrome by a reumatologist and am certain I have eds - hypermobility type, I thought they were the same thing :/

[trekster22 in reply to missteal]

Only some types of EDS 3 come up from genetic testing.

[Springsong]

I generally had lots of blood tests through rheumatology trying to determine what it wasn't as much as trying to determine what it was (i.e. test for gout, arthritis, thyroid problems, diabetes) along with xrays, mri scans & physical examinations of how I sat, walked, bent over....

[Hidden]

I was admitted as an elective in patient for two weeks in a rheumatology ward. I had various examinations,tests it was very relaxing except for physio.

[daylyn]

I went to a geneticist who ran a battery of things. Blood work-ups, pulling my skin, noticing my paper thin, abnormally large scars and bruises, having my over extend different body parts. I felt like a circus freak. LOL I have 7 children and 4 of them have it. Once I told the drs that I had EDS, they started monitoring my children and then they saw the geneticist as well.

[trekster22]

Physical examination to confirm my EDS and genetic testing to confirm the type.

[Ladyuponthelake]

My GP does not know how to refer me to get a diagnosis. Any help? I do know of the infamous Dt Hakim and plan on self referring. But are there any other options in the UK? 🌻