In 2019, I went to the ER with what I thought was just stomach pain. Within hours, I was in emergency surgery for a 4.5 cm saccular aneurysm and multiple iliac aneurysms. Complications during that procedure led to testing that revealed a life-altering diagnosis: Vascular Ehlers-Danlos Syndrome (VEDS), a rare and often life-threatening connective tissue disorder.

Before I Knew

Looking back, there were signs. As a kid, I bruised easily. I even slept with my eyes open, odd, but not something anyone connected to a serious medical condition. Like many people with VEDS or other Heritable Disorders of Connective Tissue (HDCTs), the puzzle pieces were there, but no one put them together.

Getting the Diagnosis

When I was finally diagnosed at 40, I was devastated. For months, every moment felt like it could be my last. I’d look at my family and wonder, Is this the final dinner? The last hug?

But slowly, that changed.

Finding Peace in the Present

While I still have moments where fear creeps in, they’ve become less frequent. I started focusing less on the fear of what could happen, and more on the life I was still living.

I don’t ignore the risks, but I’ve stopped letting them steal my time. I’ve learned to live with the diagnosis, not under it.

I’ve learned to focus on what matters: the time I get to spend with my family now. I’ve stopped constantly fearing the end and started more fully embracing the now.

What’s Next

My journey didn’t end with my diagnosis — it took a new turn when my son was also diagnosed. But that’s a story for the next post.