Today we will be hearing from Debbie Vaughan about her experience with Vascular Ehlers-Danlos syndrome (VEDS) and her late husband, Josh’s, story with VEDS. Josh passed away not long after their son was born. Near the end of the interview, we’ll also hear how she’s seen things change for people with VEDS in the last 27 years. In the episode, we mentioned Ehlers-Danlos Type 6, which was misquoted as periodontal EDS. However, this is now known as kyphoscoliotic EDS. 



Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at <a href="http://thevedsmovement.org">thevedsmovement.org</a>, <a href="http://loeysdietz.org">loeysdietz.org</a>, and <a href="http://marfan.org">marfan.org</a>.&nbsp;



If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit&nbsp;



<a href="https://calendly.com/d/z7h-2cc-g33">https://calendly.com/d/z7h-2cc-g33</a>



Links to resources, events, and research opportunities: 



VEDS Collaborative Research Study: Email <a href="mailto:vedscoll@ohsu.edu">vedscoll@ohsu.edu</a>&nbsp;



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



<a href="https://marfan.org/calendar">https://marfan.org/calendar</a>



Join a Walk for Victory:



<a href="https://marfan.org/walk/">https://marfan.org/walk/</a>



Help and Resource Center<a href="https://marfan.org/ask">https://marfan.org/ask</a>



<a href="https://loeysdietz.org/ask">https://loeysdietz.org/ask</a>



<a href="https://thevedsmovement.org/ask">https://thevedsmovement.org/ask</a>



Support



Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: <a href="https://staying-connected.printify.me/products">https://staying-connected.printify.me/products</a>&nbsp;



You can also support this podcast by subscribing to my Patreon at <a href="https://www.patreon.com/Translucentone">https://www.patreon.com/Translucentone</a>&nbsp;



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&nbsp;



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.&nbsp;

<a href="https://staying-connected.blubrry.net/2024/09/06/debbie-vaughan-sharing-josh-dosss-story-with-veds/">Source</a>

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