Erin Langley
Erin Langley was tested for VEDS (Vascular Ehlers-Danlos Syndrome) due to some concerning family history, but her results came back as a Variant of Unknown/Uncertain Significance, or VUS. In this episode, she shares her experience with those results and how she’s found support in the meantime.
Link to the articles mentioned in the interview:
The known unknown: the challenges of genetic variants of uncertain significance in clinical practice https://academic.oup.com/jlb/article/4/3/648/4820755
Mother’s Negligence Suit Against Quest’s Athena Could Broadly Impact Genetic Testing Labs
Link to Annabelle’s Challenge study mentioned in the interview: https://www.annabelleschallenge.org/veds-research-vus
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 to resources, events, and research opportunities:
VEDS Collaborative Research Study: Email vedscoll@ohsu.edu
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
Join a Walk for Victory:
Help and Resource Center
https://thevedsmovement.org/ask
Support
Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Deitz while supporting Staying Connected at my printify pop-up store: https://staying-connected.printify.me/products
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