VEDS Action Day: The “V” in VEDS Matters

Please note: this story discusses and depicts emergency medical experiences.

Guest blogger Maia Fleener is living with VEDS and volunteers with the VEDS Movement as an advocate and voice of lived experience.

For me, this day is deeply personal. I live every day with Vascular Ehlers-Danlos syndrome (VEDS) – a rare genetic condition that affects the body’s blood vessels, organs, and connective tissue. It’s unpredictable and often invisible, but it’s part of who I am.

The “V” in VEDS stands for vascular, but to me, it also stands for vitality, visibility, and voice.

Vitality – because every day is a reminder of strength and resilience.

Visibility – because rare doesn’t mean unseen.

Voice – because sharing our stories leads to awareness, research, and hope.

Today, I’m using my voice to make VEDS visible – and I hope you’ll join me. Whether it’s donating, sharing, or simply learning about VEDS, every action matters. Because the “V” matters.

My Story

Four years ago, I got sick-and my world changed with three words: Vascular Ehlers-Danlos. In these years, I’ve grieved the life I thought I’d have. I’ve mourned moments stolen by fear, pain, and fragility. But I’ve also celebrated resilience, community, and the chance to still be here.

The V isn’t just a letter. It means fragile arteries, ruptures, and emergencies that can’t wait. Too many have been turned away, dismissed, or lost because VEDS wasn’t understood. That’s why #TheVMatters-because naming it clearly can save lives. That’s why #TheVMatters. It means recognition. It means urgency. It means life.

Four years later, I hold grief, gratitude, and hope. Hope that awareness saves lives. Hope that voices are heard. Hope that pain ends – and in the meantime, we hold on, we fight, and we live.