Hi...well it does help to know for sure but it does sound like u have it...I got my dx b4 surgery and my NS did not use stitches and or staples to eliminate the possibility of the stitches pulling out...I still was very slow to heal...the scar had open wounds for quite some time....they were surface wounds only...but...I still had the oozing to contend with. Knowing I had EDS also made it easier to deal with.My scar healed nicely too ...and the xtra oozing did not affect that.
I know there r Rheumatoid drs that specialize in EDS and they do suggest genetic testing to confirm the exam dx and to be sure what all is involved...ie- vascular EDS.....
I have yet to get an appointment myself as that is also a distance to travel to get to, but I do plan on doing it soon.I understand the cost ect....but, the fact that EDS has many types that can not be determined thru the physical exam, I find it best to know for sure. If I have the vascular type....there r many things that my drs would need to know if I needed surgery again...which I was told I did....2 more...so, it is a decision u need to make.
There r ways we need to exercise and things we should avoid exercise wise....and getting that info straight from the horses mouth so to speak is what I would like to hear.....so many conflicting things going on now....do this for chiari, but not for EDS...so then what can I do?
My facial features are small too!!....I had to have my tonsils and adnoids out in the second grade as I was a mouth breather as a result of the nasal passages being too small.....one dr even asked if I had plastic surgery to make my nose smaller....NO....lol......take a close look...same one I was born with.....
"selma"
PS- we do have a EDS group here....
http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc