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Taborski McClellen

 
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Manage episode 388509191 series 2295478
Content provided by Katie Wright. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Katie Wright or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.

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.

Source

  continue reading

117 episoade

Artwork
iconDistribuie
 
Manage episode 388509191 series 2295478
Content provided by Katie Wright. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Katie Wright or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ro.player.fm/legal.

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.

Source

  continue reading

117 episoade

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