Brent Tuinstra was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in his thirties after a bowel perforation. In this episode, Brent talks about the experience with the bowel perforation, the misdiagnosis of Crohn’s that came before his VEDS diagnosis, what it felt like getting diagnosed with VEDS, and how he’s gotten involved since. 

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: 

VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population

https://bit.ly/VEDSsurvey

Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:

https://marfan.org/calendar/

Join a Walk for Victory:

https://marfan.org/walk/

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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. 

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