Jacqui Fish
Jacqui Fish, whose 24 year-old son George has vascular Ehlers-Danlos Syndrome (VEDS) shares her experience as mom and George’s experience with VEDS, including a number of serious medical events, including a bowel perforation, artery dissections, posterior reversible encephalopathy syndrome (PRES), and pneumothorax.
Find more information about VEDS including support groups and medical webinars, at thevedsmovement.org
Links mentioned in the episode:
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
Real Talk: VEDS with Bella, the in_VEDS_tigator:
https://youtube.com/live/X5KDA7N-a44?feature=share
Flyer for NW GAAP Symposium at OHSU on Sept 19:
https://staying-connected.blubrry.net/wp-content/uploads/2023/08/Aortic-Dissection-Day-2023-Flyer.pdf
Registration:
form.jotform.com/232205213035136
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming announcement:
https://marfan.org/2023/08/21/announcing-2023-2024-foundation-programs/
Join a Walk for Victory:
https://marfan.org/walk/
The Ehlers-Danlos Society Genetically Defined EDS event in Ghent, Belgium:
https://www.ehlers-danlos.com/event/genetically-defined-eds-strategies-solutions-for-unmet-needs/#tribe-tickets
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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.
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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