By: Ryan Rodarmer, Director, The VEDS Movement 

“The ‘V’ alerts doctors that the vascular type of Ehlers-Danlos syndrome (EDS) is a different beast. It means not only am I hypermobile, not only do I bruise easily, but my type of EDS is lethal.” These words from Kristi Posival, a member of the VEDS community, reflect why The VEDS Movement launched The V Matters campaign this October during VEDS Action Month. We want the world to understand that Vascular Ehlers-Danlos syndrome (VEDS) is a rare, life-threatening condition that demands specialized care and urgent attention. 

VEDS is caused by changes in the COL3A1 gene affecting the production of type III collagen, which makes arteries and organs dangerously fragile: they can suddenly rupture or tear without warning, leading to medical emergencies that require immediate recognition and expert care. While some people with VEDS may also show signs of joint hypermobility, this is not what defines the condition—the vascular and organ complications do. Too often, VEDS is mistaken for less severe conditions in medical settings, and the crucial distinction of the “V” is overlooked. That single letter can mean the difference between appropriate care and devastating delays.  

This October, The V Matters campaign has been raising awareness through projects that make the vascular distinction visible and improve care. Community members and supporters are painting a red letter “V” on their hands and sharing photos on social media with #TheVMatters, joining a t-shirt design contest, and sharing personal stories about their experiences with VEDS. Volunteers are also working across the country to secure state proclamations recognizing October as VEDS Action Month.  

Alongside these efforts, we are introducing new and updated resources. At the center is VEDS911.com, a new mobile-friendly site designed to give first responders instant access to critical, life-saving information. We are also releasing a redesigned emergency wallet card for quick reference in a crisis. These resources, along with continued work to make preparedness tools more accessible and action-oriented, aim to equip both families and providers to respond effectively when every moment counts. 

This month also featured special educational programming. On October 27, leading experts Drs. Peter Byers, Hal Dietz, Shaine Morris, and Sherene Shalhub took part in a live virtual fireside chat to answer top community questions. Emergency physician Dr. Rob Pena, who lives with Marfan syndrome, is also preparing a short video to help first responders and emergency department teams better recognize and care for patients with Marfan, Loeys-Dietz, and VEDS. These efforts bring vital knowledge directly to the professionals who are most likely to encounter VEDS in urgent, high-stakes situations. 

As Director of The VEDS Movement, I see every day how critical it is for health care providers and the public to understand what makes VEDS different. The V in VEDS signals that this condition is defined by fragile arteries and organs that can rupture without warning, not by hypermobility. The V Matters campaign is about ensuring that the distinction is clear so that people with VEDS are recognized, taken seriously, and given the urgent imaging and care they need. 

This VEDS Action Month, every photo shared, every story told, and every new resource used helps bring us closer to a future where the “V” is understood in every clinic, every emergency room, and every conversation about Ehlers-Danlos syndromes. The V matters, and by raising awareness together, we can save lives. 

The VEDS Movement is a division of The Marfan Foundation, a member of the National Health Council.