Season 5
Toni Harrison
Emily Ranta
Jared Griffin
Maria Vowles and Mandy Carpenter
Elissa Hanneman
Season 6
Today we are gong to hear from Toni Harrison, who was initially diagnosed with hypermobile EDS. After an event, she received genetic testing that showed she actually has VEDS. In this episode, she is going to share her experience and how her VEDS diagnosis impacts her life. 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 and events mentioned in the episode 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 The Marfan Foundation Symposiums: https://marfan.org/resources/educational-opportunities/ 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 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.
Today we hear from a previous guest, Emily Ranta, who was on the show in 2018. In this episode, she’ll share her experience with a bowel perforation and how her life with VEDS has been since her last interview. 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 and events mentioned in the episode Emily's first interview on Staying Connected in 2018: https://staying-connected.blubrry.net/2018/12/30/emily/ REDS4VEDS Day, hosted by Annabelle’s Challenge https://www.reds4veds.org Real Talk: VEDS, with Katie and Bella, the in_VEDS_tigator https://www.youtube.com/live/Qp9wn3HoDgg?feature=share 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 The Marfan Foundation Symposiums: https://marfan.org/resources/educational-opportunities/ 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 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.
Jared Griffin, CEO and Founder of Annabelle’s Challenge, shares his experience with getting his daughter’s diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS), and experience starting Annabelle’s Challenge, a UK Charity for VEDS, more than 10 years ago. Learn more about VEDS and Annabelle’s Challenge at https://www.annabelleschallenge.org/ 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: Otto Nitschmann, who passed away April 20, 2023, shares his story with VEDS https://staying-connected.blubrry.net/2022/04/16/otto-nitschmann/ REDS4VEDS Day, hosted by Annabelle’s Challenge https://www.reds4veds.org 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 Adventuresinlove4Andie 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.
Maria Vowles and Mandy Carpenter, who lost their daughter, Andie, to Vascular Ehlers-Danlos Syndrome (VEDS) and founded Adventuresinlove4Andie, join to talk about Andie's story. In this interview, we will talk about Andie’s diagnosis of VEDS, what happened to her, and what Maria and Mandy have done with Adventuresinlove4Andie to raise awareness and support for VEDS. Please be advised that in this interview, we do go into detail about what happened to Andie that caused her death, which can be difficult to hear, and if you have VEDS or love someone with it, potentially triggering. 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: VEDS CME opportunities: https://thevedsmovement.org/resources-and-answers/for-health-professionals/cme-vascular-ehlers-danlos/ AdventuresinLove4Andie: adventuresinlove4andie.org 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 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.
Elissa Hanneman was initially misdiagnosed with Classical Ehlers-Danlos Syndrome (CEDS) as a child, but a colon perforation during her pregnancy prompted genetic testing for Vascular Ehlers-Danlos Syndrome (VEDS). Years after her diagnosis, Elissa lost all of her intestines in a two-year hospital stay due to complications from VEDS. Please be advised that in this episode, we discuss suicide and suicide intent. If you or someone you know needs help, there are resources available to you. In the US, you can get help by calling or texting 988, the Suicide and Crisis Lifeline, 24/7. If you are outside of the US, I’ve linked a list of hotlines and resources below. 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 Suicide and Crisis Lifeline- US: Call or text 988, or visit: https://988lifeline.org International Suicide Hotlines https://blog.opencounseling.com/suicide-hotlines/ 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 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.
The voices you'll hear in the upcoming season of Staying Connected, featuring community members who will be sharing their stories with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan syndrome, and Loeys-Dietz syndrome. Episodes available every other Saturday starting July 1, 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 Adventuresinlove4Andie Ashton Tanner
In this episode of Staying Connected, we talk to Ashton Tanner, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) about a year ago after a spontaneous coronary artery dissection, or SCAD, and her mother’s medical event a few weeks prior led to some puzzle pieces finally coming together. 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, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://staying-connected.blubrry.net/contact/ Links mentioned in the episode: Patient Care Coordination Note for EPIC: Vascular Ehlers-Danlos Syndrome (VEDS), Loeys-Dietz (LDS), Marfan https://marfan.org/wp-content/uploads/2021/09/PCCN-Instructions_5.15.2020.pdf Other Emergency Preparedness Resources for VEDS: https://thevedsmovement.org/what-to-expect/emergency-preparedness/ Upcoming Events: 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 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 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.
In this episode of Staying Connected, we talk to Maya Brown-Zimmerman, who was diagnosed with Marfan syndrome as a child. Because of her atypical features and medical events, her diagnosis was questioned several times and she was tested for VEDS and Loeys-Dietz before a genetic test revealed she does have an FBN1 mutation, associated with Marfan syndrome. In this episode, she shares her story with Marfan syndrome, advocacy, and her recent SCAD, or spontaneous coronary artery dissection. Find more information about Marfan syndrome, including support groups and medical webinars, at marfan.org If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://staying-connected.blubrry.net/contact/ 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 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.
In this episode of Staying Connected, we talk to Mikala Tingley, whose brother, David had Vascular Ehlers-Danlos Syndrome (VEDS). David passed away at the age of 24, and was diagnosed with VEDS after his death. Mikala is joining to share his story with VEDS. Please be advised, this episode does contain some graphic details about David’s death, which may be disturbing to some listeners. Please practice self care when listening to this episode, and reach out to your support network if you need to. 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://staying-connected.blubrry.net/contact/ 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 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.
In this episode of Staying Connected, we talk to Ben Weisman, who was diagnosed with Marfan syndrome at birth and is the third generation in his family to live with Marfan syndrome. Ben shares his story of growing up with Marfan, finding and building community, his involvement in the teen program at the Marfan Foundation, and his journey into politics. Find more information about Marfan, including support groups and medical webinars, at marfan.org If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://staying-connected.blubrry.net/contact/ Links mentioned in the episode: Contact information and social media accounts for Ben can be found @ https://www.benforboonton.com/. You can also email Ben at bweisman@gmail.com 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 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.