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Debbie Vaughan, sharing Josh Doss’s story with VEDS

1:15:07
 
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Manage episode 438528030 series 2295478
Контент предоставлен Katie Wright. Весь контент подкастов, включая эпизоды, графику и описания подкастов, загружается и предоставляется непосредственно компанией Katie Wright или ее партнером по платформе подкастов. Если вы считаете, что кто-то использует вашу работу, защищенную авторским правом, без вашего разрешения, вы можете выполнить процедуру, описанную здесь https://ru.player.fm/legal.

Today we will be hearing from Debbie Vaughan about her experience with Vascular Ehlers-Danlos syndrome (VEDS) and her late husband, Josh’s, story with VEDS. Josh passed away not long after their son was born. Near the end of the interview, we’ll also hear how she’s seen things change for people with VEDS in the last 27 years.
In the episode, we mentioned Ehlers-Danlos Type 6, which was misquoted as periodontal EDS. However, this is now known as kyphoscoliotic EDS.

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.

Source

  continue reading

117 эпизодов

Artwork
iconПоделиться
 
Manage episode 438528030 series 2295478
Контент предоставлен Katie Wright. Весь контент подкастов, включая эпизоды, графику и описания подкастов, загружается и предоставляется непосредственно компанией Katie Wright или ее партнером по платформе подкастов. Если вы считаете, что кто-то использует вашу работу, защищенную авторским правом, без вашего разрешения, вы можете выполнить процедуру, описанную здесь https://ru.player.fm/legal.

Today we will be hearing from Debbie Vaughan about her experience with Vascular Ehlers-Danlos syndrome (VEDS) and her late husband, Josh’s, story with VEDS. Josh passed away not long after their son was born. Near the end of the interview, we’ll also hear how she’s seen things change for people with VEDS in the last 27 years.
In the episode, we mentioned Ehlers-Danlos Type 6, which was misquoted as periodontal EDS. However, this is now known as kyphoscoliotic EDS.

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.

Source

  continue reading

117 эпизодов

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