Charlene’s son, Luke, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 4, after persistent issues with bruising and bleeding led to a hematologist and a diagnosis of Von Willebrand’s at 2 years old, and then later, a rheumatologist who sent him to a genetic counselor who recognized VEDS at 4 years old. Luke was the only one in the family with VEDS.

Heartbreakingly, Luke passed away in October 2021 at the age of 15. Charlene tells us about Luke and his story with VEDS in this interview, and also talks about the emergency and mismanagement in the hospital that resulted in his death. An autopsy revealed he had experienced an aortic dissection and rupture.

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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