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.
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 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.
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.
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.
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.