Connective Issues Winter 2026

How a New Resource Helped One Family Be Heard in the ER

VEDS911.com Leads to a Shift in Care The change in care was immediate.

“While I was informing the sta ff of what VEDS is, they did not seem to care,” said Julian, who was advocating for his wife during a visit to the emergency room in Michigan. For families living with Vascular Ehlers-Danlos syndrome (VEDS) like Julian’s wife and his two sons, emergency situations come with an added layer of fear and urgency. The condition is rare, complex, and often unfamiliar to emergency department sta ff , which makes rapid, informed care critical. During this visit, a new resource from the VEDS Movement made all the di ff erence. Advocating in an Emergency The VEDS Movement recently launched VEDS911.com as a tool to help families advocate for care by instructing first responders and emergency room sta ff to immediately visit the webpage for urgent VEDS-specific treatment protocols. While in the ER, Julian noticed a lack of concern that immediately raised red flags. “Before I showed the medical sta ff VEDS911, the ER sta ff seemed to be nonchalant about the situation the information that I was giving them to properly for my wife,” he said. “I did not observe any sen urgency by the medical sta ff for getting imaging d As Julian advocated for his wife by outlining seriousness of VEDS and the specific precautio requires including careful imaging decisions an awareness of arterial risks, he felt his concerns weren’t landing. he ER n, and y care se of done.” g the ns it d

“After showing them VEDS911, the medical sta ff started to become more attentive to my wife’s medical emer gency,” Julian said. “I believe it is the reason why the sta ff changed their attentiveness and urgency to the situation.” What had felt dismissive moments earlier suddenly shifted to focused, responsive care, which is vital for families facing a VEDS emergency. “It was almost as if a reset button was pressed, and the medical sta ff took our situation seriously,” said Julian. From Julian’s perspective, the power of VEDS911.com lies in its clarity and authority. “I feel that VEDS911 collectively guides the medical sta ff in patient care treatment and emphasizes the risks of what could happen if the patient is not treated in a prompt and careful manner.”

 The Arche family: Julian, Samantha, Jordan, and James

Julian first learned about VEDS911.com through Ryan Rodarmer, director of the VEDS Movement. When it became clear that verbal explanations alone weren’t enough, Julian reached out to Ryan directly while still in the emergency room. “I reached out to Ryan for assistance, and he sent the VEDS911 literature to me while I was sitting in the ER with my wife,” Julian said. “I immediately went up to the nurse’s station and showed them the literature, and then they expedited my wife’s CT scan.”

“VEDS911 was a lifesaver for us.” ~Julian

VEDS911.com is a free emergency resource available through the VEDS Movement. Families and individuals can access it via the webpage on a cell phone or print the downloadable guide to present during emergency situations. For more information, visit VEDS911.com .

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