Mar 23 2024 45 mins
Tyler Farley was originally on Staying Connected in 2022 to share his story with VEDS or Vascular Ehlers-Danlos Syndrome. He returns in this episode to share his recent experience with a bowel perforation in the fall of 2023, and how he is moving forward, as well as his experience meeting other people in person with VEDS, Marfan, and Loeys-Dietz at The Marfan Foundation Conference in 2023.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.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:
Tyler’s Walk page: https://give.marfan.org/team/561418
Tyler’s Story with Duke: https://www.dukehealth.org/blog/why-one-man-chose-duke-lifesaving-abdominal-surgery?fbclid=IwAR0m3B7Lxua6Aoxd8CAkTmwAPLn7BWR71m8oyl2qH7n-TvQ27oVBow4bhz8
Links to resources, events, and research opportunities:
VEDS Collaborative Research Study: Email [email protected]
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
Join a Walk for Victory:
Help and Resource Center
https://thevedsmovement.org/ask
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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.