Tag: aortic dissection

Marisa Hart
Marisa Hart

Marisa Hart

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In this episode, we talk to Marisa Hart, who was diagnosed with Marfan syndrome as a child. Marisa has an extensive family history and shares how Marfan has impacted her life, from sports, to seeing family members deal with Marfan, and her daily life and own surgery for pectus excavatum. 

Content warning: Brief discussion of suicide.

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 

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. 

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Ryan Rodarmer
Ryan Rodarmer

Ryan Rodarmer

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Today we’re going to talk to Ryan Rodarmer, the director of The VEDS Movement, about his personal experience with aortic aneurysm and dissection, and his career as a genetic counselor working with connective tissue conditions and VEDS prior to his role at 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. You can also find information and resources through the John Ritter Foundation, 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

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

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Bridget Porter (Metz) and her son, Connor
Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome

Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome

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Bridget Porter (Metz) joins the show to share her son, Connor’s, story with Loeys-Dietz syndrome, which he was diagnosed with after he died of an aortic dissection at the age of 13. Connor was seen by a geneticist a few years before he died, but was told there was no need for a genetic test. Bridget and her family have been involved in efforts to raise awareness and funds for research since his death in 2020.

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, 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

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

Melanie Case
Melanie Case

Melanie Case

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Today we’re going to hear from Melanie Case, who was diagnosed with Marfan syndrome in 2002, a couple years after she had a thoracic aortic dissection following the delivery of her second child. This aortic dissection went undiagnosed for about two years, and after it was discovered, it led to her diagnosis with Marfan syndrome. 

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, 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

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

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Deb Kruk And Her Son Brian
Deb Kruk

Deb Kruk

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Deb Kruk was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in her mid-60s, following the loss of her 40 year old son, Brian, to an aortic dissection. They did not know Brian had VEDS when he died. In this episode, she shares that experience, processing her own diagnosis, things she loved about Brian, 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 

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

Black man with beard, glasses, and straw hat smiles with his arm around a woman with a white beanie and dark brown hair.
Taborski McClellen

Taborski McClellen

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Taborski McClellen was diagnosed with Marfan syndrome between 12-13 years old. In the time since his diagnosis, he’s had two retinal detachments, a lung collapse, and an aortic dissection. In this interview, he talks about his story with Marfan, and his book, Living with Marfan syndrome in the Hands of GOD. 

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: 

Living with Marfan Syndrome in the Hands of GOD
https://www.amazon.com/Living-Marfan-Syndrome-Hands-GOD-ebook/dp/B0BV645L2J/ref=sr_1_1?crid=2NV7UK1OXQWHB&keywords=living+with+marfan+syndrome+in+the+hands+of+god&qid=1702075005&sprefix=living+with+marfan+syndrome+in+the+hands+of+go%2Caps%2C119&sr=8-1

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: 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

Mikala Tingley
Mikala Tingley

Mikala Tingley

By |

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. 

Podcast: Play in new window | Download

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

Privacy Policy

Disclaimer

The views, information or opinions in the blog, podcasts 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. This content is not produced by nor affiliated with The Marfan Foundation or The VEDS Movement.

About Staying Connected

Staying Connected is a podcast featuring the stories of people affected by Vascular Ehlers-Danlos Syndrome (VEDS). It is produced by Translucent One LLC.