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
VEDS Collaborative Research Study:
Email vedscoll@ohsu.edu
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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