Delaney Kinstner was diagnosed with Vascular Ehlers-Danlos Syndrome after a serious medical event 10 days after delivering her child caused her to be sedated and on ECMO for several weeks.
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
VEDS Action Month and Costume Party:
https://thevedsmovement.org/events/vascular-ehlers-danlos-action-month/
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming events:
Join a Walk for Victory:
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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.
