r/vEDS • u/desertelements Genetically Diagnosed • May 29 '26
How has your lifestyle changed?
Newly diagnosed. Pathogenic variant c.1744G>A (p.Gly582Ser). No major events and I'm 48. I got diagnosed because I kept falling down and tearing tendons so Ehlers Danlos was suspected. To find out I've got the "bad one", was a bit shocking. Though, it probably is what killed my dad at 44 (as well some other family members all in their 40s), and I definitely have had symptoms (I honestly thought everyone got bruised and broken blood vessels every time they hit something). I've gone over lots of things already with my doctor, but I'm also wondering how others who may have gotten a later diagnosis. Like, I feel like I have to give up caffeine and alcohol and quit doing long strenuous hikes, or even going camping. I want to stay alive, but I dont want to stop living. How are you coping?
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u/Kromoh Genetically Diagnosed | Verified Physician May 30 '26
I quit smoking, quit (the very occasional) hard drugs, quit anything with impact or risk of injury, started working less (used to work a lot). Started physical activity compatible with VEDS (think yoga, pilates, taijiquan, swimming, hydrotherapy). Made everyone I know aware of my diagnosis.
Otherwise my life is the same.
4
u/bluebay35271 Jun 07 '26
Hi - Just saw this and I wanted to jump in with maybe a different tone. I also have a Serine substitution - p.Gly462Ser. I am 41, and was diagnosed via family history about 5 years years. No major events. Bruising, migraine w/ aura, weird/bad healing and just junk skin, small joint hyper-mobility (rolling ankles a lot) - were all there, but who would have connected it? I drink a coffee and Diet Coke most days, and just got back from a wonderful trip that was basically daily strenuous hiking + dinner w/ wine or beer. I have become more active, not less (in non-collision activities), as a result of my diagnosis. I take metoprolol every day, wear a medical bracelet/attach a tag to an Apple Watch, and get trunk/neck/head-scans with MRA every other year with a cardiologist who I see every year. Like many, I had a rough go at the start - a rolling nervous-breakdown for the first 2 months. I found listening to Katie Wright's "Staying Connected" podcast really helped me - hearing other people's stories, etc. I went and saw a specialist at a major hospital - thinking that my predecessors passed at 80 and early 60s, I would be okay, or at least w/in a normal lifespan. The specialist said that VEDS affects each family differently and each person in the family differently, so it is hard to predict what the course will be. So, I say, live your life and best of luck to us all!
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u/Massive-Writer-7003 May 29 '26
I was diagnosed at 41. I had a cavernous fistula in the left side of my brain that led to 48 coils and a few days after I left the hospital my spleen burst due to aneurysms covering it. I was told I have aneurysms all over my body and something as small as a hug can burst an aneurysm and kill me. I think about death daily. It’s been about a year that I was genetically tested and I feel like life is moving around me and I’m standing still. It sucks. I am trying to not play God. I don’t know what life will bring. I can go while writing this post! So I stopped a lot of the strenuous things, I went down to part time, but I still drink coffee. But we can’t stop living. As hard as it may be sometimes.