Diagnosed heds but suspecting veds
I think that I may have vascular ehlors danlos syndrome and I am terrified. For years I’ve had unexplained pain, heart pain, racing, palpitations, fatigue and just over all not feeling well at all. I’ve been diagnosed with fibromyalgia, pots and ehlors danlos but we don’t know the type due to a long wait to get genetic testing. I see a cardiologist for my heart issues and I had an echocardiogram that showed thickening in my left ventricle and mild regurgitation which I read is a sign of veds. I’m also hyper mobile, have joint pain and very stretchy soft skin. I have one vericose vein in my leg I’ve had since a kid but other then that my skin is not very translucent, no history of ruptures or anything in my family and I don’t bruise easily. I’m so nervous that I have it especially since the life expectancy is not the greatest. Any advice is appreciated.
Posted Dec 1, 2025, 6:53 PM UTC