Temporada 6
Jacqui Fish
Peter Donato
Kristen St. John
Temporada 7
Jacqui Fish, whose 24 year-old son George has vascular Ehlers-Danlos Syndrome (VEDS) shares her experience as mom and George’s experience with VEDS, including a number of serious medical events, including a bowel perforation, artery dissections, posterior reversible encephalopathy syndrome (PRES), and pneumothorax. Find more information about VEDS including support groups and medical webinars, at thevedsmovement.org Links mentioned in the episode: If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Real Talk: VEDS with Bella, the in_VEDS_tigator: https://youtube.com/live/X5KDA7N-a44?feature=share Flyer for NW GAAP Symposium at OHSU on Sept 19: https://staying-connected.blubrry.net/wp-content/uploads/2023/08/Aortic-Dissection-Day-2023-Flyer.pdf Registration: form.jotform.com/232205213035136 Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming announcement: https://marfan.org/2023/08/21/announcing-2023-2024-foundation-programs/ Join a Walk for Victory: https://marfan.org/walk/ The Ehlers-Danlos Society Genetically Defined EDS event in Ghent, Belgium: https://www.ehlers-danlos.com/event/genetically-defined-eds-strategies-solutions-for-unmet-needs/#tribe-tickets 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 Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
Peter Donato, who was diagnosed with Loeys-Dietz Syndrome, or LDS, in fifth grade, shares his experience growing up with LDS, being involved in the community and the teen program at The Marfan Foundation, and its division, the Loeys-Dietz Syndrome Foundation, and adapting his love of sports to his life with LDS while maintaining his health. Find more information about LDS including support groups and medical webinars, at https://www.loeysdietz.org/ If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: The Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming announcement: https://marfan.org/2023/08/21/announcing-2023-2024-foundation-programs/ Join a Walk for Victory: https://marfan.org/walk/ Positive Exposure https://positiveexposure.org/ Peter's Twitter handle: @petahchip19 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 Ryan Rodarmer Benjamin Weisman 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.
Kristen St. John, whose daughter Marcie was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, shares her and Marcie's experience with diagnosis and life with VEDS, including a bowel perforation that Marcie had at 4 years old. Find more information about VEDS, including support groups and medical webinars, at thevedsmovement.org If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming announcement: https://marfan.org/2023/08/21/announcing-2023-2024-foundation-programs/ Join a Walk for Victory: https://marfan.org/walk/ VEDS Zebra Group on Facebook: https://www.facebook.com/groups/352286631530771 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 Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona 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.
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!
Delaney Kinstner was diagnosed with Vascular Ehlers-Danlos Syndrome after a serious medical event 10 days after delivering her child caused her to be sedated and on ECMO for several weeks. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population https://bit.ly/VEDSsurvey VEDS Action Month and Costume Party: https://thevedsmovement.org/events/vascular-ehlers-danlos-action-month/ Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming events: https://marfan.org/calendar/ Join a 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 Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona 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.
Dominga Noe was diagnosed with Marfan syndrome at 9 years old following her father’s aortic dissection. Since her diagnosis, she’s become very involved in the community, and now runs the teen program as an employee of The Marfan Foundation. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population https://bit.ly/VEDSsurvey Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming events: https://marfan.org/calendar/ Join a 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 Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona 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.
Brent Tuinstra was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in his thirties after a bowel perforation. In this episode, Brent talks about the experience with the bowel perforation, the misdiagnosis of Crohn’s that came before his VEDS diagnosis, what it felt like getting diagnosed with VEDS, and how he’s gotten involved since. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population https://bit.ly/VEDSsurvey Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar/ Join a 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 Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
Mary Meyers’ daughter, Adalynn, was diagnosed with Loeys-Dietz Syndrome when she was about a year and half old. In this episode, Mary tells the story of Adalynn’s diagnosis following problems with feeding, food allergies, cleft palate, hypermobility, and more, as well as her experience as a parent learning to live with this diagnosis and become an informed advocate for her daughter. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population https://bit.ly/VEDSsurvey 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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
Grace Barnhart was diagnosed with Marfan syndrome when she was 4 years old. She’s also a caregiver to her dad who has Marfan syndrome. In this episode, she talks about growing up with Marfan, getting involved in advocacy and community at a young age, medical events she’s dealt with of her own and of her dad’s, and how she lives her life as a young adult knowing she has Marfan. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population https://bit.ly/VEDSsurvey 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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver
Allison’s son, James, was diagnosed with Marfan when he was 3 years old, following a lens dislocation. James is now 8 years old, and in this episode, Allison talks about his diagnosis story, how they handle communicating Marfan with James, research, navigating the US healthcare care system, and more. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33 Links mentioned in the episode: VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population https://bit.ly/VEDSsurvey VEDS Collaborative Research Study: Send an email to vedscoll@ohsu.edu for more information on how to enroll. 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 Holtom Adventuresinlove4Andie Ryan Rodarmer Benjamin Weisman Fiona McIver