Coming to Terms with My VEDS Diagnosis

woman with short dark brown hair smiling in front of a purple birthday cake

My brother, Zach, was only 39 years old when he suddenly passed away from a severe, instant aortic dissection. It was fast and nothing could have been done to save him. I do take comfort in that. After his passing, the questions arose; “Why did a seemingly healthy, young guy pass away from something that typically happens to people…

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Members of the VEDS Community and The VEDS Movement’s Steering Committee Share Their Experiences with the FDA

On October 7, as part of VEDS Action Month, several of The VEDS Movement’s Steering Committee members met with the FDA for a Patient Listening Session. Patient listening sessions are small, informal, non-regulatory discussions with the FDA about experiences with diseases and disorders. The VEDS Movement reached out to the FDA to request this listening session on behalf of…

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NIH Researchers Launch Study to Understand Health Impacts of COVID-19 on those with VEDS, Marfan, and Loeys-Dietz

Help NIH Researchers understand the health impacts of COVID-19 on people with Marfan, VEDS, and Loeys-Dietz Researchers at the National Institutes of Health (NIH) are interested in how COVID-19 impacts the health of people with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan Syndrome, and Loeys-Dietz. You can help by completing an online survey about your experiences. The survey is open to…

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Tony Yasick, Board Member of The Marfan Foundation, Shares His Story with VEDS in USA Today

Tony Yasick, an anesthesiologist, chair of the Defy Foundation, and Marfan Foundation Board Member, shared his story with Vascular Ehlers-Danlos Syndrome (VEDS), titled, “I ran from my lethal diagnosis for years. Let’s make this rare disease a household word,” in USA Today. The VEDS Movement and The Marfan Foundation are incredibly grateful to Finn Partners for working with Tony…

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A Successful Emergency Outcome

Dominick Corso and his family enjoying a day on the boat. Dominick has VEDS and shared his story of a successful emergency outcome with The VEDS Movement

Dominick Corso was diagnosed earlier this year with Vascular Ehlers-Danlos Syndrome (VEDS), and quickly became involved in the community through virtual support groups and by engaging with the online community on Facebook. Just a few weeks ago, Dominick experienced an emergency. While getting ready for a day on a boat with his family, he started feeling pain and discomfort…

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The Dawn of a Second Decade

When I was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) 10 years ago, following a traumatic vascular event, my family was handed a piece of paper printed off of google and told, “good luck.”I remember thinking, “half a page on the internet is the best they could do?” It is almost impossible to believe now, in the age of the…

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The VEDS Movement and The Sullivan Group Announce New CME

New CME for Vascular Ehlers-Danlos Syndrome! A new online course is now available to medical professionals to increase awareness and diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS) among emergency physicians, nurses, and advanced practice clinicians. VEDS, a rare form of Ehlers-Danlos Syndrome, is often misdiagnosed or undiagnosed until a major life-threatening medical event. Individuals frequently describe their long road to…

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Diagnostic Odyssey Leads The Jeffs Family to Become Advocates For VEDS

Ask any parent how they would describe parenting in a couple of words. Some of the responses may be joy, angst, concern, protection, and amusement. But, the most important answer that stands out among the others is often unconditional love. Having a child with a life-threatening condition adds an incredible amount of concern and devotion to the parenting journey….

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Aortic Dissection Collaborative COVID-19 Survey

The Aortic Dissection Collaborative currently has two opportunities for you to provide input on your experiences with aortic dissection:  The COVID-19 Survey explores healthcare for aortic dissection during the COVID-19 pandemic.Who is eligible to take this survey? People with or at risk for aortic dissection; family members/care partners of those with or at risk for aortic dissection; and care providers…

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