Ehlers-Danlos Support UK

Mildly dilated aortic root

I'm waiting for official confirmation of my EDS II or III diagnosis, but in the meantime...

I was referred to Rheumatology because of suspected EDS in January this year. I have stretchy-ish skin, the atrophic scars, the bendy joints. Rheumatology must have wanted to do a belt and braces job, as they referred me to Cardiology for an ECG, despite no cardiac symptoms. Turns out I've got a 'mildly dilated aortic root', but in the letter Cardiology sent to the Rheumy consultant they didn't specify what the normal range was. I've now been re-referred to Cardiology. And Genetics.

Anyhow, the question is this: how common is aortic root dilation in the EDS community, and is it likely to develop further? I'm not particularly worried about it for now, although I am glad they caught it, but do wonder whether it's likely to turn into an aortic aneurysm.

1 Reply

Hello, I'm new to this forum. All I can say is that you are incredibly lucky to have been diagnosed and treated quickly especially with the aortic dilation so early on. My sister had marfanoid features, as stated on her death certificate. There was no other medical reason given for her death. Despite many consultants appointments as her health deteriorated no one picked up on her symptoms and acted upon them. Her aorta ruptured as a result of having undiagnosed EDS for 26 years in 1991. I personally believe that she had EDS, coincidentally the mother of a young girl at the school where I work gave me the EDS guidance booklet in 1995. It was like a revelation and strange coincidence to be given this information as it was clearly evident that my sister had classic EDS symptoms, even being born with a club right foot.

In 1991 she sadly died of a ruptured aorta as she had received no treatment or guidance for her condition.

So it makes me feel better that your symptoms are being reviewed and monitored closely.

You are very lucky in a way.

Take care and I hope I haven't offended you in any way by replying.


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