I was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS), in 2017. In this episode, I’m joined by my brother, Jacob Frederick, to talk about his experience with my diagnosis and hospitalizations. 

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: 

Sillybug Studios:
sillybugstudios.com 

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

VEDS Collaborative Research Study:
Email vedscoll@ohsu.edu 

Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
https://marfan.org/calendar/

Join a Walk for Victory:
https://marfan.org/walk/

Help and Resource Center

https://marfan.org/ask

https://loeysdietz.org/ask

https://thevedsmovement.org/ask

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. 

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