Tag: bowel perforation

Young man with dark hair, blue jacket, and khaki pants sits on a couch smiling at his dog, who is sitting on his lap. The dog is medium size, gray and black.
Catching up with Tyler Farley

Catching up with Tyler Farley

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Tyler Farley was originally on Staying Connected in 2022 to share his story with VEDS or Vascular Ehlers-Danlos Syndrome. He returns in this episode to share his recent experience with a bowel perforation in the fall of 2023, and how he is moving forward, as well as his experience meeting other people in person with VEDS, Marfan, and Loeys-Dietz at The Marfan Foundation Conference in 2023. 

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:

Tyler’s Walk page: https://give.marfan.org/team/561418 

Tyler’s Story with Duke: https://www.dukehealth.org/blog/why-one-man-chose-duke-lifesaving-abdominal-surgery?fbclid=IwAR0m3B7Lxua6Aoxd8CAkTmwAPLn7BWR71m8oyl2qH7n-TvQ27oVBow4bhz8  

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. 

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Brent Tuinstra
Brent Tuinstra

Brent Tuinstra

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Brent Tuinstra was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in his thirties after a bowel perforation. In this episode, Brent talks about the experience with the bowel perforation, the misdiagnosis of Crohn’s that came before his VEDS diagnosis, what it felt like getting diagnosed with VEDS, and how he’s gotten involved since. 

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: 

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

Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:

https://marfan.org/calendar/

Join a 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
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. 

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Mikala Tingley
Mikala Tingley

Mikala Tingley

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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

Emily Ranta
Emily Ranta

Emily Ranta

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Today we hear from a previous guest, Emily Ranta, who was on the show in 2018. In this episode, she’ll share her experience with a bowel perforation and how her life with VEDS has been since her last interview.

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 and events mentioned in the episode

Emily’s first interview on Staying Connected in 2018:

https://staying-connected.blubrry.net/2018/12/30/emily/

REDS4VEDS Day, hosted by Annabelle’s Challenge
https://www.reds4veds.org 

Real Talk: VEDS, with Katie and Bella, the in_VEDS_tigator

https://www.youtube.com/live/Qp9wn3HoDgg?feature=share

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

The Marfan Foundation Symposiums: 

https://marfan.org/resources/educational-opportunities/

 

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

 

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.

Podcast: Play in new window | Download

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.