Temporada 4
Trailer: Season 4
Sarah Fulop
Follow-up with Jeremias Tays
Cristy Gann
Samantha Arche
Tyler Farley
Kelly Gann
Katy DeCoursey
Temporada 5
This season we are going to talk to 7 members of our community about their stories and experiences with VEDS. We’ll hear from several people who have a VEDS diagnosis themselves, including a mom who lost her son to VEDS last year, as well as a spouse and mom of people with VEDS. We also have a returning guest to talk about his experience since our last interview together, about three years ago. Season 4 starts on September 17 and will be available on all major podcast players and on YouTube. This podcast is not produced or affiliated with The Marfan Foundation or The VEDS Movement. Thank you to my Patrons for supporting this show. Connected Patrons: Jon Holtom Kacey Keegan Support the show by joining my Patreon at patreon.com.translucentone
Sarah Fulop was diagnosed with VEDS, or vascular Ehlers-Danlos Syndrome, after her sister died from complications following a pregnancy. Her brother also died of an aortic dissection at age 15, when she was about 3 years old. While her family is in some ways the textbook case of VEDS, they inherited the condition through a mosaic mutation, which made the diagnosis harder to recognize. In this interview we’ll be take a dive into the feelings she’s been navigating with her VEDS diagnosis, including survivor’s guilt and medical PTSD. In this episode, we referenced the CardioNerds podcast episode about Sarah’s sister, Lizzie Gasser. You can listen to that podcast episode here: https://www.cardionerds.com/127-a-family-touched-by-vascular-ehlers-danlos-syndrome-the-life-legacy-of-lizzie-gasser/ Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you! 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
In today’s episode, we’re going to touch base with Jeremias Tays, who was on the podcast back in 2019. He’s going to share his experience and insights over the last three years, as well as his experience with a bowel perforation that occurred in November 2021. The original interview with Jeremias in 2019 can be found at https://staying-connected.blubrry.net/2022/10/01/follow-up-with-jeremias-tays/ and on all major podcast players. Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you! You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone Big thank you to my top tier patrons! Jon Holtom Kacey Keegan
Cristy Gann was diagnosed with VEDS after her son Hunter died of an aortic dissection last year, in September of 2021. Hunter was only 14 years old. In this interview, Cristy shares what happened to Hunter, signs of VEDS that were missed in both her and Hunter, and how she is handling her own diagnosis. Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you! 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.
In today’s episode, we’re going to talk to Samantha Arche, who was diagnosed with VEDS following a uterine rupture during the delivery of her second child. Samantha was concerned that she might have VEDS prior to this, but struggled to get genetic testing. In the episode I mentioned the prior interview with Meg Boeglin, which is available here: https://staying-connected.blubrry.net/2020/01/26/meg-zoe-and-izaak/ Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you! 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.
In today’s episode, we’re going to talk to Tyler Farley, who was diagnosed with VEDS following a bowel perforation when he was 17. The VEDS diagnosis explained many things for Tyler, including the early death of his father, but also was a really challenging diagnosis to get when he was about to go into college. Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you! 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.
In today’s episode, we’re going to talk to Kelly Gann, who was diagnosed with VEDS in 2009, when she was in Physician Assistant (PA) school. Kelly shares how she coped with that diagnosis, how her life has changed since then, and how her experience has changed now that her sister, Cristy, has also been diagnosed. Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you! 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.
Katy’s husband, Mike, and her son were diagnosed with VEDS in 2020. In this episode, Katy shares her perspective as a spouse and a mom of loved ones with this condition. These episode show notes will be updated with a link to the kids book, “Wonderfully Made,” once it is available on Kindle. Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, 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, let me know here. I look forward to hearing from you! 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.
Clips from the upcoming season of Staying Connected, available on March 25 wherever you listen to podcasts. 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.
Today we are gong to hear from a member of our community in the UK, Clare Stacey, who was diagnosed with VEDS following her mother’s death when Clare was 14 years old. In the episode, she is going to share how her understanding of and interaction with her VEDS diagnosis has changed as she has gotten older and dealt with medical events of her own. 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: The Rare Disease Podcast 4 Medics: Not Just Hypermobility https://podcasts.apple.com/us/podcast/not-just-hypermobility/id1591571033?i=1000562501357 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 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 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.