What Medical Professionals Should Know about VEDS
The DiSCOVER Trial: Part 1
The DiSCOVER Trial: Part 2
Special: Emotional Recovery
Season 1
Bridgette
Deborah and Soren
Shannon
Annie
Aaron
Carla
1 of 13
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 Holtom Kacey 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.
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 Holtom Kacey Keegan Adventuresinlove4Andie Ashton 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.
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 Holtom Kacey Keegan Adventuresinlove4Andie Ashton 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.
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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver Transcript https://staying-connected.blubrry.net/wp-content/uploads/2024/05/SC_Special_Emotional-Recovery.pdf
Welcome to the first episode of Staying Connected! I started Staying Connected as way to connect with other people diagnosed or impacted by vascular Ehlers Danlos Syndrome (vEDS). In today’s episode, I talk to Bridgette, who was diagnosed in her early twenties following an angiogram that went terribly wrong. She needed twelve surgeries to save her life from the angiogram, which was intended to get a better look at her carotid cavernous fistula. If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!
In this episode I talk to Deborah, whose 9 year old son was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) at the age of five. We hear about the road to diagnosis, changes they’ve made to his daily life, and coping strategies. To learn more about Deborah’s books and to get one, visit http://www.amazon.com/author/daroach
Today I talk to Shannon, who was diagnosed with both the vascular and classical types of Ehlers Danlos Syndrome. She is just shy of 32 years old and has lived through 32 surgeries related to complications from EDS! If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!
In this episode I talk to Annie, who was diagnosed clinically with vEDS at 8 years old and officially diagnosed at 14. Annie is the first person I have met in person with vEDS and she is amazing! It is such a gift to be able to get to know her If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!
Aaron is 33 and was diagnosed a year and a half ago with vascular Ehlers Danlos Syndrome (vEDS). He tells us his story of diagnosis and events that he has experienced so far. He also tells us about his father’s story with vEDS, which was undiagnosed when he passed away two years ago. This interview was done in person over the weekend that the vEDS collaborative met in Seattle. To make a donation to the vEDS Collaborative, https://app.mobilecause.com/vf/vEDS If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!
Carla and her daughter Effie were diagnosed with vEDS after Effie was put into foster care for suspected abuse. It wasn’t until Effie and Carla got diagnosed with vEDS that Carla and her husband were able to get her back. If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!