Charlene Terrell Newman And Luke
Charlene Terrell-Newman and Luke

Charlene Terrell-Newman and Luke

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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, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

Thank you to my Connected Patrons for supporting this show and content about VEDS! Connected Patrons:
Jon Holtom

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The views, information or opinions in the blog, podcasts and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services. This content is not produced by nor affiliated with The Marfan Foundation or The VEDS Movement.

About Staying Connected

Staying Connected is a podcast featuring the stories of people affected by Vascular Ehlers-Danlos Syndrome (VEDS). It is produced by Translucent One LLC.