Hi Debbie,
Welcome to the Zebra club! Yes, you have stripes too.
There are genetic tests possible but they do not test for all types of EDS.
Type 6, the stretchy ligaments, fragile skin and tissue kind , does not show up on tests.
So my family doctor diagnosed me through physical tests. Not all hyper mobile EDS patients have all of their muscles and ligaments hyper mobile...my right thumb bends 100% backwards, not my left. It's because it got dislocated once. That's all it takes for me.
I dislocate both knees, hips and shoulders...because it happened once they never snap back...they are forever stretched out.
Ankles too. I just had a massive sprain...this time they casted me...now I have a brace and physio starts in 2 weeks. My whole leg is still blue after 3 weeks.
Tell your doctors that you have EDS. They cannot ignore it even if they don't understand it...if you said that you are diabetic would they refuse to believe you because they don't understand it,
They'd look it up.
That is their job.
To treat their patients.
Print out the sheet on type 6 and carry it around with you...show it every time.
My surgeon here didn't believe me until I popped 5 days post op. Now he trusts me.
Sharon