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EPISODE · Aug 2, 2024 · 47 MIN

Erin Langley

from Staying Connected

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 https://www.genomeweb.com/molecular-diagnostics/mothers-negligence-suit-against-quests-athena-could-broadly-impact-genetic 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 [email protected] 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 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 You can also 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

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Erin Langley

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This episode is 47 minutes long.

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This episode was published on August 2, 2024.

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