Published: 02/02/2024 Tags: Stories

vEDS is a painful road, but having answers helps

I was 36 when I was officially diagnosed with vascular Ehlers-Danlos syndrome (vEDS). I’ve always had loose joints, hypermobility, gastrointestinal issues, and cardiac issues, but they all worsened around age 27.

I kept passing out that year, and no one could understand why. I finally had a doctor perform an exploratory heart cath on me, and it showed multiple fistulas from my coronary arteries to my pulmonary artery. They placed coils and plus to block the flow, and I developed aneurysms around those and had a systemic allergic reaction to the nickel in the plug. I had my first open heart surgery at 32 to get rid of the plug and surgically repair the aneurysms.

It failed, and I had my second one at age 35. It also failed.

Finally, an amazing Neurologist did a skin biopsy to determine vEDS since my genetic markers showed only a variance of unknown significance. I’ve since had a pacemaker placed to help control my drastic HR drops from POTS, and I’ve scheduled my ablation to control the A-fib, PACs, and SVT from heart failure. It’s a painful road, but having answers really helps. Most doctors still don’t understand it, but I’m trying to help educate the ones in my area.

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