Kristen St. John, whose daughter Marcie was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, shares her and Marcie's experience with diagnosis and life with VEDS, including a bowel perforation that Marcie had at 4 years old.
Find more information about VEDS, including support groups and medical webinars, at thevedsmovement.org
If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit
https://calendly.com/d/z7h-2cc-g33
Links mentioned in the episode:
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming announcement:
https://marfan.org/2023/08/21/announcing-2023-2024-foundation-programs/
Join a Walk for Victory:
VEDS Zebra Group on Facebook:
https://www.facebook.com/groups/352286631530771
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Disclaimer
The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.
