Q&A about my life with VEDS

Join me for a live Q&A about my life with and experiences with VEDS.
The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.

[@arno3664]

I stopped alcohol and caffeine (also fast food) completely. Like my whole life I knew I had veds but no one told me that this can have a major impact in the long term. Even my mum, who knew that my dad used to over drink sometimes when going out with friends and had major pain, completely failed to mention it. I was told my whole life it was an accident. The „accident“ was just the final push over the cliff. I am so so so happy that slipped out of my mums mouth without her realizing (I was 26) - else it would of been a ticking time bomb. I thought yeah I just get bruises easily, am a bit weaker, need to be just a bit careful than others - that’s it. Now I‘m really taking care of my body, light weight training, long walks, eating healthy and I have almost no bruises anymore which blows my mind - I always had a lot of bruises. To see how when you change your lifestyle it can have such a major impact on your body is mind blowing. (healthy 20% body fat now, that seems to be the sweet spot) Summarized what I‘m trying to say is: do your own research, close friends, family and even doctors will fail to mention critical things and lie (hopefully not the doctor) to protect you emotionally. Like of course you shouldn’t stay at home and be full of fear the rest of your life - but stuff like super intense sports, drinking alcohol … can easily be replaced with less risky stuff and you still can live a happy and longer life ☺️ Is anyone taking beta-blockers? My doctor recommended it to me, I tried it, worst nightmare. The dosage was waaaay too high. I peed 1.5-2 liter out in like 10min (got like rid of blood cell stuff) and I was for hours short before blacking out. At some point the panic-adrenaline ran out and I blacked out. Felt like I died. Was super traumatized, every time I moved, I ate or heard loud noises I started to panic and then panicked even more when I felt my heart pumping. Took a really really long time to recover mentally. But if it’s in smaller doses maybe again? The doctor said there is this one famous study that recommends it, but I wasn’t completely sold 😅 What made it even worse- I was home alone when everything went black in front of my eyes, thanks to the adrenaline I gained back Vision called uber and drove fast to the hospital emergency 😅 😂

[@SandrinaN]

I have the neck artery pain. It comes on suddenly and it’s tremendously painful. I also have the TMI’s. I had a complete ascending aortic dissection at age 58. I knew since I was young that something was wrong with me. I wasn’t diagnosed until I had my aortic dissection.

[@TranslucentOne]

I’m so glad you survived that aortic dissection!

[@belicka2001]

Hi, many hugs for you Katie🤗🤗 when did you notice your transluncent skin? What did doctors said about that to your mom? ❤

[@TranslucentOne]

Hi! It’s been translucent as long as I can remember. I don’t know if mom asked about it, but the times I asked doctors about it, they had no idea. It was kind of like a “some people have really visible veins and some don’t” kinda thing.

[@AF-gd7fh]

Do you have other friends with veds? It's so rare that I imagine it can get lonely. Eds is more common but they're quite different in terms of severity, so the relatability isn't the same.

[@TranslucentOne]

Yes I have a lot of friends with VEDS! There’s really a growing community ❤️

[@thialee30107]

Cynthia from north Georgia.

[@danielle2215]

You are a beautiful person. Thanks for all you do.

[@TranslucentOne]

Thanks Danielle ❤️

[@katkaplan3]

Love your vids. ❤

[@TranslucentOne]

Thank you, Kat! ❤️

[@katkaplan3]

I have, and Had all the same lifelong symptoms, misdiagnosed with a million things, only dx as well in 2017, but with Ed’s , the bloodwork says no to veds, but I have all the physical appearance issues.

[@TranslucentOne]

I am glad the blood work was negative for VEDS, although I’m sorry you’ve been through all of those misdiagnoses !

[@francesmarin5965]

Oh no. I missed this. Seeing it now.

[@francesmarin5965]

As always, great job and tell Big Foot I know the location! ❤

[@TranslucentOne]

Thanks Fran! I should’ve mentioned Carotid Cavernous Sinus Fistula for the ocular issues- but I always think of it as a vascular issue with ocular side effects and I totally didn’t mention it! Thanks for the support ❤️❤️❤️

[@kimberlychristensen6267]

Hi, Katie!

[@TranslucentOne]

Hey Kim! You must be watching the replay!! ❤️❤️❤️