Staying Connected

Staying Connected


Kristen St. John

September 23, 2023

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:



https://marfan.org/walk/



VEDS Zebra Group on Facebook:



https://www.facebook.com/groups/352286631530771



Support



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



Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:



Jon Holtom
Kacey Keegan
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman



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. 



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. 





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