#Combination vEDS and TAAD

4 messages · Page 1 of 1 (latest)

native rampart
#

I've just discovered I might have a combination of vEDS (vascular Ehlers-Danlos syndrome) and TAAD (thoracic aortic aneurysm/dissection). Either one of these would be bad enough, but having both is an unstable, lethal combination. What does this mean? My connective tissue is either less abundant or weaker than most people's. Joint issues, easy bruising. But more importantly: my arteries are ticking time bombs. An aortic rupture could happen anywhere, at any time, with even the slightest bit of physical activity. If I even sneeze too hard, it could potentially kill me.

What's worse, without a major shift in diet and career, I could die before I turn 28. This has rocked me to my core and obviously taken a recent, major toll on my mental health. I'm going to have genetic testing done, but knowing I could potentially have a massive aortic rupture happen any day, and that's it, has scared the living hell out of me.

harsh cape
#

I feel sorry for you, and it's really sad. But now if you want to live on, you really have to put in a lot of effort and diet

native rampart
#

Part of the problem is, I'm also on the autism spectrum and I have texture issues with food, as well as a rather limited palette + I'm a supertaster

So that means a lot of the "healthy" stuff I can't stand