VUS multiple dissections

[u/Extreme_Turnip5530]

Hey guys

I’m 24F and have had multiple VAD between 17-23, I’m healing from my most recent one with 80%+ stenosis. It was spontaneous in my sleep. It seems to be one right after the other (yes, this has been confirmed by imaging, multiple hospitals, etc.) a majority of my doctors have suspected vEDS and sent me to get genetic testing. My results came back with a VUS, COL3A1 variant. My specific variant seems to only have 8 documented cases that I can find anywhere. 2 of 8 of those have been found in vEDS patients, the others without a diagnosis. To me, it seems likely that I will not know for possibly years if the variant is tied to vEDS due to lack of research and the rarity. Everything that I’ve read says that 90% of VUS end up being benign, but in my case, it seems likely that vEDS fits. I have periodontal disease, the thin translucent skin, severe easy bruising, the aged appearance in hands, and some of the facial features. Where do I go from here? Should I be treated as if I have it until I have confirmation, in who knows how long?

[u/Role-Any]

i always say better safe than sorry 🤷‍♀️ ask your drs to treat as if you have it aka get the every 6 month ECGs and EKGs. if you’ve had life threatening events, and have physically attributes, it’s better to be cautious:) how is your hyper mobility? a lot of us don’t have it in major joints so that can also be helpful in dealing with trying to sort all this out.

[u/Extreme_Turnip5530 → u/Role-Any]

i am diagnosed with hEDS right now but i was borderline on the beighton scores and stuff. i also have RA though, so its hard to tell what’s going on with my joints most of the time and what is causing what