Sarah Fulop was diagnosed with VEDS, or vascular Ehlers-Danlos Syndrome, after her sister died from complications following a pregnancy. Her brother also died of an aortic dissection at age 15, when she was about 3 years old. While her family is in some ways the textbook case of VEDS, they inherited the condition through a mosaic mutation, which made the diagnosis harder to recognize. In this interview we’ll be take a dive into the feelings she’s been navigating with her VEDS diagnosis, including survivor’s guilt and medical PTSD.
In this episode, we referenced the CardioNerds podcast episode about Sarah’s sister, Lizzie Gasser. You can listen to that podcast episode here: https://www.cardionerds.com/127-a-family-touched-by-vascular-ehlers-danlos-syndrome-the-life-legacy-of-lizzie-gasser/
Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation. Find the full disclaimer at translucentone.blog.
If you would like to share your story with VEDS on this podcast, visit https://translucentone.blog/contact/. I look forward to hearing from you!
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