“The mental health burden of living with VEDS is profound,” says Karen MountainJohnson, a licensed clinical mental health counselor who lives with the condition. “I would argue that having mental health support is as vital as having a cardiologist.” Living with Vascular Ehlers-Danlos syndrome (VEDS) brings unique challenges, but having the right support can make a meaningful difference in how…
It was the little touches that made the June 20 Well Kirtland Golf Fundraiser for the VEDS Movement so fun—and so meaningful, says Michelle Henderson, whose daughter, Lucy, age 9, lives with VEDS. Approximately 120 guests played 18 holes at the St. Denis Golf Club in Chardon, Ohio. They putted for prizes, entered raffles, snacked on hot dogs, and enjoyed dinner afterward. But one of the…
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,…
Strengthening connection, amplifying voices, and moving forward—together. About the Leaders Kristi and Dominick bring complementary strengths: decades‑deep lived experience and mentorship; fresh energy grounded in gratitude to the community; and a shared commitment to practical action. They’re focused on clear communication, collaboration with clinicians and researchers, and building an inclusive community where every person impacted by VEDS can find…
Tom was convinced or was maybe convincing himself, that he did not have VEDS, couldn’t have VEDS. He had played football, did heavy lifting, worked outdoors climbing and lugging lumber, and never had anything go wrong. Additionally, he believed testing was worthless because there was no treatment, no cure. He figured having the diagnosis meant living life as a…
“While having VEDS has been really scary, we’ve felt very lucky as well, to be a part of such a friendly and compassionate community. Every event we’ve been to through The VEDS Movement has been a great experience for our family. Zee, who is 6, has been able to form lasting friendships at camp. We’re happy he has friends…
For years I carried two backpacks. One with my volleyball gear, and one with my supplies for school. Although the fashion statement was questionable, I wore them with pride because I believed it spoke to who I was, an athlete, a student, a hard worker, and the girl who could do it all. For years I carried two backpacks,…
I’ve been through so much in the past eight years, and I’m still here. I want to share my story to encourage others to listen to their bodies and not give up. Keep searching until you find the appropriate medical help for yourself and your family members. It started in 2011 when I began having major colon and stomach…
My father died of an aortic dissection when I was seven years old. For thirty years, none of us knew why. The turning point was when my own son was born in 2014. My son, Alex, had some complications at birth and was on a feeding tube for several months after he was born. He was aspirating when drinking…
My story with Vascular Ehlers-Danlos Syndrome (VEDS) began in 2007, after a maxillary artery emergency and a thoracic aneurysm left me with more questions and no answers. For nine years, I sought out several medical consultations, spent countless hours doing my own research, and ultimately found a supportive physician and colleague who referred my daughter and me for genetic…
