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
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
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver
Podcast: Play in new window | Download
Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More