A blonde woman with straight hair hugs her 8 year old son, who has glasses and short brown hair.

Allison Pullins

By Katie Wright | November 25, 2023

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, 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

https://bit.ly/VEDSsurvey

VEDS Collaborative Research Study: Send an email to vedscoll@ohsu.edu for more information on how to enroll.

Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:

https://marfan.org/calendar/

Join a Walk for Victory:

https://marfan.org/walk/

Help and Resource Center

https://marfan.org/ask

https://loeysdietz.org/ask

https://thevedsmovement.org/ask

Support

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