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. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. Also find more support for aortic dissection and ways to get involved through the John Ritter Foundation for Aortic Health, johnritterfoundation.org  Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email vedscoll@ohsu.edu  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 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 HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver 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.  Transcript https://staying-connected.blubrry.net/wp-content/uploads/2024/05/SC_Special_Emotional-Recovery.pdf Share Post Share Source

Today, we’re going to talk to Carmen David, who is going to share her experience with an aortic dissection after the delivery of her second daughter, her experiences recovering from that physically and emotionally, how she handled the information of two VUS’s, or Variants of Unknown Significance, and what she’s been doing since her dissection to raise funds for research.  Links mentioned in the episode: * Runforaortichealth.com * Johnritterfoundation.org * Aortichope.org  * Aortic Dissection Collaborative https://www.pcori.org/research-results/2022/community-led-research-development-aortic-dissection-collaborative *https://improvead.org/ *Aortic Athletes Facebook Group https://www.facebook.com/share/18CNWsphrL/ *AD in Pregnancy/PostPartum Facebook Group https://www.facebook.com/groups/1282484088538178/?ref=share&mibextid=NSMWBT *contact for Carmen David, regarding the run event Runforaortichealth@gmail.com Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. Also find more support for aortic dissection and ways to get involved through the John Ritter Foundation for Aortic Health, johnritterfoundation.org  Links to resources, events, and research opportunities:  VEDS Collaborative Research Study: Email vedscoll@ohsu.edu  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 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 HoltomAdventuresinlove4AndieRyan RodarmerBenjamin WeismanFiona McIver 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

It’s been a minute, and I am excited to get back to the show. If you’re interested in sharing your story on the next season, please let me know by filling out this form. https://calendly.com/d/z7h-2cc-g33 Look forward to talking with you soon! Share Post Share Source

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! Share Post Share Source

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   Share Post Share Source

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! Share Post Share Source

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! Share Post Share Source

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! Share Post Share Source

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! Share Post Share Source

Brook had years of complications that pointed towards vEDS, or Vascular Ehlers Danlos Syndrome, but it wasn’t until his 40s that he was finally diagnosed. He has been through so much and his story is inspirational! Stay tuned for more episodes on the last Sunday of every month!   Share Post Share Source

Chrystal was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) along with her mother and brother. She has survived a pregnancy and is the last surviving member of her family who has vEDS. She was an inspiring person to talk to! <3 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! Share Post Share Source

Emily was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) after a misdiagnosis of Classical EDS and the passing of her mother, who also had vEDS and was not properly diagnosed. Emily still finds joy in music, and continues to play for her mom. <3 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! Share Post Share Source

As a twist, in this episode my friend Becca asks me about my story! If you want to check out what I’ve been up to, you can find a link to my youtube youtube.com/translucentone Don’t forget to subscribe to this podcast to hear more patient stories with Vascular Ehlers Danlos Syndrome! 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! Share Post Share Source

Ed wasn’t diagnosed with vEDS (Vascular Ehlers Danlos Syndrome) until after he survived open heart surgery. Like many, the diagnosis brought answers to his life, but also came with many challenges. If you like this podcast and want to hear more, be sure to subscribe! Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation. 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! Share Post Share Source

Sarah shares her 5 year old son Andrew’s diagnosis story, and challenges along the way. In this episode we also briefly talked about variances in outcomes with vEDS (Vascular Ehlers Danlos Syndrome) depending on mutation type. The video by Dr. Byers explaining the mutation types is here on youtube: https://youtu.be/ZVnWiNR6bdY Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation. 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! Share Post Share Source

Lynley is 21 years old and was diagnosed with vEDS (Vascular Ehlers Danlos Syndrome) following a lung collapse, or pneumothorax. Her dad also had vEDS, which was a clue in for the diagnosis. She tells us her story with vEDS and various issues she has had over the years, including a retina detachment, and how her outlook has changed since diagnosis. Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation. 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! Share Post Share Source