As an Ehlers-Danlos patient myself (Hypermobility Type), I'd say you, with your Classical Type, are wise to be aware of this kind of risk with E-D.
However, since you had an echo just last year and the only leaky valve was your mitral (so common as to be essentially normal), and your aorta--and I would suppose your aortic root dimensions?--were found to be fine, I think you should stop worrying. You don't even have any definite information about the cause of your uncle's death, and he did not show signs of Ehlers-Danlos, so fretting about this really doesn't do you any good or give you any useful information.
That said, it would be prudent for you to be under the regular supervision of a rheumatologist (with whom you could reasonably discuss your fears) and a cardiologist. A stress echo every couple of years would also be a good idea. With that approach, *if* there were changes in the aorta, they would be caught early.
Thanks for your reply & easing my mind a little. Last night my mother said that the coroner informed her that he died of a coronary thrombosis not a pulmonary thrombosis. I would of thought that coming from the coroner it should be pretty solid evidence that it wasn't an aortic aneurysm. My cardiologist said that there is no need for a follow up until another 10 years. This sounds a long time? I cannot find the letter that proceeded my echo all i know is that it said that everything with my heart was fine.
Ten years seems like a longish time to me, but perhaps your doc figures that since you were born with Ehlers-Danlos and are now 36, without any signs of aortic involvement, you're stable and at low risk.
That's rational. Personally, I'd feel more comfortable with a scan every five years.
It does seem long to me. My son has also got EDS & he is 8 years old. He had his first echo last year & he also has a very mild regurgitation but he has to go back in 5 years which makes more sense. I may mention to my doctors that i would prefer to have a follow up in 5 years also. Thanks for your help & i do feel more at ease now.
Just to confirm that i have had 3 echo's in total, first one at 15 then 25 & the final one at 35 all with normal aorta findings.
It looks as though you are being followed nicely, as is your son.
I think you should feel confident about your treatment and that of your child.
Just remember that you can always, always call your doc if you are concerned about anything.