Deb Kruk was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in her mid-60s, following the loss of her 40 year old son, Brian, to an aortic dissection. They did not know Brian had VEDS when he died. In this episode, she shares that experience, processing her own diagnosis, things she loved about Brian, and more.
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 to resources, events, and research opportunities:
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
Support
You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone
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