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 HoltomAdventuresinlove4AndieAshton TannerRyan RodarmerBenjamin 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. 



Share

Tweet


Share



Source

Ver todos los episodios