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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A Successful Emergency Outcome

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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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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