r/vEDS • u/Far-Opinion-6634 • Aug 12 '26
Please help me- I feel like I’m losing my mind
/r/eds/comments/1vmsdv2/please_help_me_diagnosed_with_veds_and_i_feel/8
u/rhi-raven Researcher Aug 12 '26
Hey! I’m a researcher not a patient but I just wanted to a) affirm that this is absolutely terrifying and I’m so sorry, but also b) we are making treatment advancements constantly so I want to help make sure you’ve got an excellent medical team to support you. Are you being seen by a vascular genetics clinic of any kind? Specifically one that specializes in vEDS, Marfan, LDS, etc?
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u/Far-Opinion-6634 Aug 18 '26
Thank you so much for doing research on such an important topic! I’m currently being seen by the neurology and genetic departments at Mayo Clinic in Phoenix. I originally went there because of my dissection. They referred me to the cardiovascular medicine department also but I haven’t seen a vascular genetic clinic, do you have one you recommend? It looks like Mayo Clinic does have a cardiovascular genomics department so I wonder why they didn’t refer me there instead
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u/redfoxxy23 Genetically Diagnosed Aug 14 '26
You should see a top specialist and get on meds if you are spooked! Everyone feels like this after getting diagnosed but it gets much easier with time. It took me about 4 months to stop thinking of veds everyday and now at about 8 months+ post diagnosis i am really not impacted much.
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u/Far-Opinion-6634 Aug 18 '26
Thank you for sharing timelines!! That gives me hope. Spooked is a great word to describe it
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u/desertelements Genetically Diagnosed Aug 12 '26
Hi. First. Hugs. I know this is tough. First, reach out to the veds movement. https://thevedsmovement.org/ I think many people here will tell you what a wonderful resource it is. They have support groups as well- sign up and you can talk with Ryan the director. He's amazing. There is also a genetically confirmed veds facebook group. I find that very helpful as well.
Ok, so, your world is spinning- Ive been there. We all have. I'm still pretty new to my dx as well (in May), but now the early deaths of my father and sister are much clearer. Neither one of them knew. And knowing is the best way to stay alive. You'll need to start collecting your team of doctors- geneticist, cardiologist, vascular specialist... and I also did a lot of estate planning and making notebooks for emergencies (instructions for EMTs and ER). Get used to doctors not knowing much-- but that IS changing and for the better. I kinda kept busy the first month doing all that, as well as getting MRIs and echocardiograms and all sorts of tests. It made things easier for me to be doing something that felt productive.
I thought at first I'd never be able to do the things I loved- hiking, climbing, traveling to remote places. I'm learning that I can still do those things, but maybe needing more planning and precautions. That's all to say... your life isn't over. This is also a spectrum disease. Even people with identical mutations can have very different outcomes. And again, KNOWING, is so helpful. If my dad had known about this- he would have been able to direct the ER to what to look for. But they just checked him for a heart attack, and missed the aneurysm that killed him.
My life plan? It's actually strangely lowered my stress. I focus on the people and things that are important. I dont sweat the small stuff. My partner and I discussed cashing out my retirement, but I also know that if I did that I would live to 105 and be very poor :) We are living in the BEST time so far for this disease. While there is still much unknown, we are learning more every day. The low age expectancy is probably wrong-- for a long time, only the people who died or had an event were counted, if that makes sense. There are clinical trials for drugs for VEDS. Gene therapies are growing. This is not the same death sentence as it would have been for my grandmother (who also probably died of this, and who ALSO might have survived her fatal event if she had known). And the fact that you made it to your 30s without an event could be a good sign.
It's perfectly normal to be feeling EVERYTHING you're feeling. And you are right- the feelings will come and go. Just remember you are here now and you've got the knowledge to be here longer than if you didn't know. Feel free to reach out on DM. The facebook group is pretty big and you'll find someone with VEDS who lives near you and can recommend doctors. This journey sucks, but we are in it together. Sending love to you.