In this episode we’re going to talk to Nancy Billon, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) with a combination of her medical history and a genetic test that revealed a VUS on COL3A1. 

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 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

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 

You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8, or you can also 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
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
Scott
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. 

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Roe Nania shares her family’s story with Vascular Ehlers-Danlos syndrome (VEDS). Roe’s brother, Angelo, was the first person diagnosed in the family, and died from an aortic dissection in 2019. After his death, more members of the family got tested and diagnosed, and it’s assumed that her father also died from VEDS. 

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:

BeloVEDS, a Nania Foundation:  

https://belovedsfoundation.org

or

www.naniafoundation.org 

Comedy Show on April 27th: 

https://belovedsfoundation.org/upcoming-events

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 Holtom

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. 

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Lauren Atherton was diagnosed with Loeys-Dietz syndrome after an aortic dissection when she was 28 years old. In this interview, we talk about that dissection, how she’s dealt with her diagnosis, 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 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 Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
Scott
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. 

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Michelle Lucena was diagnosed with VEDS, or Vascular Ehlers-Danlos syndrome, after two carotid artery dissections. In this interview, we talk about how these dissections affected her military career, how she’s handled her diagnosis, and how she’s held onto her passion of physical fitness.

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: 

Michelle’s fitness channels:

Instagram: @eat_lift_inspire

Facebook: https://www.facebook.com/profile.php/?id=100093220154236&name=xhp_nt__fb__action__open_user

YouTube: https://youtube.com/@michellelucena5564?si=-b085REdLKDkRT93

Global Genes RARE Compassion Project:

https://globalgenes.org/rare-compassion-program/

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 Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
Scott
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. 

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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!

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
Scott
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. 

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. 

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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. 

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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. 

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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. 

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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. 

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

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

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Dr. Shaine Morris, pediatric cardiologist and researcher at Texas Children’s Hospital, and advocate for our VEDS community, shares how she got involved with the VEDS community and talks about her current research, the CLARITY registry.

To enroll or get more information about the CLARITY study mentioned in this podcast, email Shaine’s research coordinator, Nadia, at nxespahb@texaschildrens.org

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 to my Connected Patrons for supporting this show and content about VEDS! Connected Patrons:
Jon Holtom

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Charlene’s son, Luke, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 4, after persistent issues with bruising and bleeding led to a hematologist and a diagnosis of Von Willebrand’s at 2 years old, and then later, a rheumatologist who sent him to a genetic counselor who recognized VEDS at 4 years old. Luke was the only one in the family with VEDS.

Heartbreakingly, Luke passed away in October 2021 at the age of 15. Charlene tells us about Luke and his story with VEDS in this interview, and also talks about the emergency and mismanagement in the hospital that resulted in his death. An autopsy revealed he had experienced an aortic dissection and rupture.

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 to my Connected Patrons for supporting this show and content about VEDS! Connected Patrons:
Jon Holtom

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Dominick Corso was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 44, after a sudden medical emergency that identified three aneurysms: two iliac artery aneurysms and an abdominal aortic aneurysm. This event led to his doctors suspecting a connective tissue condition and sending him to a geneticist who ultimately diagnosed him with VEDS.

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

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Grace Ehrbar was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, at 12 years old after a spontaneous bowel perforation. She is the only person in her family with VEDS. In this episode, Grace shares her experience with the bowel perforation when she was 12, as well as how her knowledge and attitude towards VEDS has changed in adulthood as she learned more about it. She also shares how her diagnosis has impacted her experience and career in the medical field.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

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.

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Otto Nitschmann was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 30, after he experienced a sudden splenic artery rupture. This event, combined with his hypermobile joints and his dad’s early death from a brain aneurysm, led his rheumatologist to consider VEDS and order a genetic test.

You can reach out to Otto through his Facebook page, https://www.facebook.com/otto.nitschmann

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.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Heidi Green’s daughter, Isabella, was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2021 when she was 8 years old. For years Heidi asked her pediatrician about problems Isabella had, but was told these things were likely due to her being born premature. When she pushed for genetic testing in 2021, she finally got the answer.

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

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Christopher Underwood was diagnosed with VEDS at the age of 52, after surviving an aortic dissection and complications following the dissection, including the amputation of the front half of both of his feet. His mother died of an aortic dissection at the age of 82, and his cardiologist recommended he get tested for VEDS. In this episode Chris tells us about what he went through with his aortic dissection and complications that followed, and how he’s coped with his diagnosis and the amputations.

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!

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Karen DeCoursey was diagnosed with VEDS following her brother, Mike’s, diagnosis in 2017. For Karen, the diagnosis offered answers for many unanswered medical questions in her life, as well as the answer for her father’s death at the age of 49. In this episode, Karen talks about what she went through before and after her diagnosis, including feeling like she was a hypochondriac for many years of her life.

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!

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Jonathan Kile was diagnosed with VEDS in 2016 following a series of life-threatening emergencies, including an iliac artery rupture and an aortic dissection. His diagnosis at the age of 42 also offered an explanation for his mother’s early death when he was 5 years old. In this episode, Jon talks about what he survived, how he copes with his diagnosis, and how he feels about the diagnosis of his two kids.

You can keep up with Jon through his blog at www.dontmakemeturnthisvanaround.com

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!

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Lise Voje-Johanson’s daughter, Karna, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) when she was 8 years old in 2019, after her father, Trond, was diagnosed. Lise shares her experience getting and coping with Karna’s diagnosis, as well as information about the medical system in Norway.

This podcast episode is dedicated to Trond, who lost his life to VEDS on October 16, 2021, after the recording of this interview.

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!

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Dr. Melissa Russo is a maternal fetal-medicine specialist, clinical geneticist, and researcher in our VEDS community. In this episode, Melissa shares how she got involved, what she’s working on in research, what inspires her, and her personal experience losing a friend to VEDS.

Melissa is pursuing additional research collaborations with Dr. Bart Loeys in Europe, Dr. Shaine Morris in Texas, and Dr. Sherene Shalhub in Washington to better understand pregnancy outcomes for people with VEDS, and for people who have had children with VEDS who do not have VEDS themselves.

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!

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Ashley Rose Marisch was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2017, after previously being diagnosed with FMD, or fibromuscular dysplasia. Her sister, Allyson Jane, ultimately continued researching their family’s experience and history and pushed for the genetic testing for VEDS that led to Ashley Rose, Allyson Jane, and their mother, Dawn, to be diagnosed. Allyson Jane passed away in 2020 of a ruptured aortic dissection. In this episode, Ashley Rose shares her experience getting diagnosed, and how she copes with the diagnosis and the loss of her sister.

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!

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Mike DeCoursey was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2016 following the diagnosis of his son. The diagnosis came with an explanation for his father’s death at the age of 49 to a ruptured aortic aneurysm- something he had been told did not have a genetic cause. You can read more about his efforts to raise awareness and funds for VEDS at walkwithdeco.com.

There are a few support groups out there for people affected by VEDS, both through The VEDS Movement and the Ehlers-Danlos Society. You can find support groups through The VEDS Movement at thevedsmovement.org/supportgroups and through the Ehlers-Danlos Society through their website at Ehlers-Danlos.com. You can also reach the nurse at The VEDS Movement Help and Resource Center at thevedsmovement.org/ask

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Erik was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) four years ago at the age of 43, after a spontaneous renal artery dissection that occurred while he was at work. He talks about how he got to his diagnosis, ways his life has changed since, and how he stays positive.

Erik’s family runs an annual chili cook-off event to raise awareness for rare conditions and diseases, called “Chillin for a Cure.” You can find more information about their event on their facebook page, here https://www.facebook.com/Chillin-for-a-Cure-379482395942307

If you are looking for more information about VEDS and support, there are great resources at The VEDS Movement, https://TheVEDSMovement.org. This podcast is not produced by or associated with The VEDS Movement.

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Dawn was diagnosed with VEDS in 2009, and is now 62 years old. Even though her mom passed away at 38 from an aortic rupture when Dawn was just 8 years old, it wasn’t until after a spontaneous rectal hematoma when she was 51 that her team was able to put the pieces together. In this episode, Dawn shares her experience with her diagnosis, and what she has been through since.

You can learn more about VEDS and find support groups at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement.

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More

Matthew was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in 2020, when after years of struggling to get answers, he came across characteristics of VEDS, including sleeping with his eyes open, on The VEDS Movement website in early 2020. Knowing he had so many of the characteristics, and previously had been dismissed by a geneticist, he sought after answers again with a second geneticist. His genetic test came back positive for VEDS in the summer of 2020.

Matthew shares his story, and how he processed the information of his and his mom’s diagnoses while also living through the pandemic.

You can learn more about VEDS and find support groups at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement.

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Android | Pandora | iHeartRadio | Blubrry | Email | TuneIn | RSS | More