“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,…
Editor’s Note: The following post was written by our Director, Ryan Rodarmer, and was originally featured by The Marfan Foundation to highlight Aortic Dissection Awareness Week. Ryan Rodarmer, Director of The VEDS Movement I thought I had everything under control, but my body had other ideas—a fact I learned on the morning of April 9, 2019. For nearly fifteen…
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…
Introduction For those living with Vascular Ehlers-Danlos Syndrome (VEDS) or supporting loved ones with this condition, staying updated on research developments can provide valuable information. New studies continue to emerge that help us better understand how medications might reduce the risk of serious complications in VEDS. Here, we share summaries of two recent research articles that provide important insights…
A Dutch VEDS natural history was recently published. The article provides a comprehensive look at the natural history of Vascular Ehlers-Danlos syndrome (VEDS) in a Dutch cohort, involving 142 patients. The study found that males, and those with specific gene mutations or distinctive physical characteristics, are at a higher risk of experiencing serious complications at an earlier age. Major…
We are excited to announce a special event for our community and healthcare professionals with an interest in Vascular Ehlers-Danlos syndrome (VEDS). Dr. Hal Dietz, a leading figure in VEDS research, will be answering your questions in a live virtual Q&A session.
As we navigate through the holiday season, a time of joy and togetherness, we’re also reminded of the challenges and hardships that can accompany these days. It’s a period that can bring a mix of emotions, especially for those in our VEDS community facing health struggles or remembering loved ones. Acknowledging Our Community’s Resilience This season, we take a…
As we continue to advance our understanding of Vascular Ehlers-Danlos syndrome (VEDS) and seek effective treatments, it’s crucial to stay updated on the progress of ongoing human trials. Here are the latest developments in two key trials that hold promise for our community: Celiprolol Trial Update: In a significant industry development, Acer Therapeutics was acquired by Florida-based Zevra Therapeutics,…
