Staying Connected

Over the last few seasons of Staying Connected, I’ve asked some of our community members living with or caring for loved ones with Vascular Ehlers-Danlos Syndrome (VEDS) what they think medical professionals should know about VEDS. This special episode is a compilation of some of those responses. There are several organizations providing information and support for people affected by VEDS and medical professionals. Some of those are The VEDS Movement, Annabelle’s Challenge, and the Ehlers-Danlos Society. I encourage you to visit their websites and learn more. You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:Jon HoltomKacey Keegan The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services. Share Post Share Source

Part 1 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Chris joins to discuss the history of Edsivo, or celiprolol, and the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS  (Vascular Ehlers-Danlos Syndrome) in the United States.  Learn more about the DiSCOVER Trial at discoverceliprolol.com  Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org.  If you would like to share your story with VEDS on this podcast, visit  https://staying-connected.blubrry.net/contact/ Links mentioned in the episode: DiSCOVER Trial: discoverceliprolol.com  VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement https://www.ehlers-danlos.com/events/veds-family-camp/ The Marfan Foundation Conference:  https://marfan.org/conference/ The Marfan Foundation Walk for Victory: https://marfan.org/walk Team VEDS- Pacific Northwest Walk for Victory https://give.marfan.org/teamvedspnw Support You can 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 HoltomKacey KeeganAdventuresinlove4AndieAshton Tanner 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 Post Share Source

Part 2 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Adrian joins to discuss the details of the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS  (Vascular Ehlers-Danlos Syndrome) in the United States.  Learn more about the DiSCOVER Trial at discoverceliprolol.com  Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org.  If you would like to share your story with VEDS on this podcast, visit  https://staying-connected.blubrry.net/contact/ Links mentioned in the episode: DiSCOVER Trial: discoverceliprolol.com  VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement https://www.ehlers-danlos.com/events/veds-family-camp/ The Marfan Foundation Conference:  https://marfan.org/conference/ The Marfan Foundation Walk for Victory: https://marfan.org/walk Team VEDS- Pacific Northwest Walk for Victory https://give.marfan.org/teamvedspnw Support You can 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 HoltomKacey KeeganAdventuresinlove4AndieAshton Tanner 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 Post Share Source

I (Katie) am currently the hospital with a renal artery dissection and kidney infarction. This show will take a pause, and the season will be resumed when I am feeling up to it. Thanks for all your support! Share Post Share Source

After my recent renal dissection, kidney infarction, and iliac dissection with Vascular Ehlers-Danlos Syndrome (VEDS), I wanted to know what emotional recovery was like for others after medical events. This episode features clips of people with VEDS, Marfan, and Loeys-Dietz syndromes, sharing what emotional recovery was like for them after diagnosis, major medical events and the loss of loved ones. Jon HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver Transcript https://staying-connected.blubrry.net/wp-content/uploads/2024/05/SC_Special_Emotional-Recovery.pdf Share Post Share Source