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内容由Katie Wright提供。所有播客内容(包括剧集、图形和播客描述)均由 Katie Wright 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal
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Kristen St. John

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Manage episode 377784197 series 2295478
内容由Katie Wright提供。所有播客内容(包括剧集、图形和播客描述)均由 Katie Wright 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

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

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.

Source

  continue reading

102集单集

Artwork
icon分享
 
Manage episode 377784197 series 2295478
内容由Katie Wright提供。所有播客内容(包括剧集、图形和播客描述)均由 Katie Wright 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

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

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.

Source

  continue reading

102集单集

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