Ehler Danlos/Marfans esque syndrome

General Discussion
#1

Anyone exhibiting Ehlers Danlos/Marfans esque symptoms should get CT Scans. We are potentially at high risk for Aortic Aneurysms and Dissections. Especially, if you have genetic pre-dispositions. With monitoring at least every six months, lives will be saved. Who knows, this may be why some sufferers disappear. Of course, if they sadly do die, said Aortic issues will likely not be linked to PFS. A couple of celebs we suspect who had pfs died from Cardiac events.

I also know of a couple of sufferers who are no longer active on here were found to have Aortic aneurysms and are both young guys.

Just a heads up as I’ve recently developed heart problems which need to be investigated further.

Kindest

Laz

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#2

@LazarusRy
I have an aortic aneurysm located in the aortic root, just above the heart. It measures 4.6 cm with 3-4 cm considered “normal,” and over 5 is a danger zone.

This summer I had a coronary computed tomography angiography (CCTA) and also heart catheterization. Doctors concluded my coronary system is healthy, EXCEPT for the root dilation.

They sent me home with warnings and a follow-up appointment next year. They feel the damage may be caused by high BP in past years, but don’t truly know.

Added here for contribution to knowledge. Jim

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#3

Thanks for adding this Jim. Many mention changes to heart rhythm, BP etc but I expect looking into this deeper is quite uncommon.

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#4

Thank you. I had previously been diagnosed with suspected ehlers danlos by a medical professional, albeit a hand surgeon, who, after all conventional rehabilitation efforts failed, strongly suspected the syndrom after realizing I exhibited many of the defining characteristics. After getting pfs, things have definitely gotten worse. Much weaker feeling joints, loud pops that didn’t used to be there when I make routine movements, and the occasional, yet wildly concerning epiose of heart arythmia. A bit too scared to test for the ehlers danlos subtype where heart failure is indicated, because if I have it, and pfs exacerbated it, all hope of recovery and a normal life thereafter would be limited to the next ten years (im about 30 now, and life expectancy with the subtype is 40ish), and, well, after that…

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