Allison Pullins

Allison’s son, James, was diagnosed with Marfan when he was 3 years old, following a lens dislocation. James is now 8 years old, and in this episode, Allison talks about his diagnosis story, how they handle communicating Marfan with James, research, navigating the US healthcare care system, and more.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org (thevedsmovement...) , loeysdietz.org (loeysdietz.org) , and marfan.org (marfan.org) .
If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit
calendly.com/d...
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
bit.ly/VEDSsurvey
VEDS Collaborative Research Study: Send an email to [e-mail] (mailto:[e-mail]) for more information on how to enroll.
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
marfan.org/cal...
Join a Walk for Victory:
marfan.org/walk/
Help and Resource Center
marfan.org/ask
loeysdietz.org...
thevedsmovemen...
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Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
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.
Source (staying-connec...)