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Risk of developing aortic aneurysm Ehlers Danlos sufferer

Hi all, i have got myself into a downward spiral of worrying regarding the following, hope someone can help? I am a 36 year old male with Classical type Ehlers Danlos Syndrome which i inherited from my father. His mother my grandmother also had it & his sister has it. His brother my uncle did not show any signs of having it. My grandmother passed away suddenly at the age of 45 & the information i have points towards the cause of death being an heart attack. I am currently trying to get an hold of the death certificate to confirm this. My dad is 57 & is still alive. My auntie is 54 & still alive. What is worrying me is that my uncle died at the age of 60. My auntie believes it was an aortic aneurysm although i have been told that the coroner said it was a pulmonary thrombosis. That is the only information regarding my uncle that i know of. I am worrying myself silly that i may develop an aortic aneurysm also? My auntie had an echocardiogram & all was clear that was 8 years ago. I had an echocardiogram last year & my aorta was fine although i have a really mild regurgitation from my mitral valve. Should i be worrying? Thanks.
6 Responses
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
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