Category: Staying Connected

Betsy Matarrita

Betsy Matarrita

Betsy Matarrita was born and raised in Costa Rica, and was diagnosed with Marfan syndrome when she was a young child. Growing up, she didn’t know anyone else with Marfan syndrome, and they had to come to the US to get medical care for scoliosis as a child, when her and her family did not speak English. In this episode, she shares her medical story, and her story of connecting with the Marfan community and getting involved in the Spanish-language summit hosted by 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

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

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. 

Roe Nania

Roe Nania

Roe Nania shares her family’s story with Vascular Ehlers-Danlos syndrome (VEDS). Roe’s brother, Angelo, was the first person diagnosed in the family, and died from an aortic dissection in 2019. After his death, more members of the family got tested and diagnosed, and it’s assumed that her father also died from VEDS. 

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:

BeloVEDS, a Nania Foundation:  

https://belovedsfoundation.org

or

www.naniafoundation.org 

Comedy Show on April 27th: 

https://belovedsfoundation.org/upcoming-events

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. 

Kevin Kroeker

Kevin Kroeker

Kevin Kroeker shares his story with Loeys-Dietz syndrome, which he was diagnosed with in his 50s after a spontaneous coronary artery dissection (SCAD). His Loeys-Dietz diagnosis explained a prior event with his carotid artery, and uncovered a larger family history of Loeys-Dietz.

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:

Loeys-Dietz Syndrome Foundation (US): loeysdietz.org

Loeys-Dietz Foundation Canada https://loeysdietzcanada.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

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. 

Catching up with Tyler Farley

Catching up with Tyler Farley

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. 

Liam Nelson

Liam Nelson

Liam Nelson was diagnosed with Marfan syndrome when he was 11 years old. In this interview, we talk about how he handled his diagnosis, his career in film and comedy, his involvement in the Marfan community, 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 mentioned in the episode:

Liam’s website: liamnelsoncomedy.com 

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. 

Lauren Atherton

Lauren Atherton

Lauren Atherton was diagnosed with Loeys-Dietz syndrome after an aortic dissection when she was 28 years old. In this interview, we talk about that dissection, how she’s dealt with her diagnosis, 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 

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. 

Michelle Lucena

Michelle Lucena

Michelle Lucena was diagnosed with VEDS, or Vascular Ehlers-Danlos syndrome, after two carotid artery dissections. In this interview, we talk about how these dissections affected her military career, how she’s handled her diagnosis, and how she’s held onto her passion of physical fitness.

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: 

Michelle’s fitness channels:

Instagram: @eat_lift_inspire

Facebook: https://www.facebook.com/profile.php/?id=100093220154236&name=xhp_nt__fb__action__open_user

YouTube: https://youtube.com/@michellelucena5564?si=-b085REdLKDkRT93

Global Genes RARE Compassion Project:

https://globalgenes.org/rare-compassion-program/

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. 

Taborski McClellen

Taborski McClellen

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

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. 

Jacob Frederick (Katie’s brother)

Jacob Frederick (Katie’s brother)

I was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS), in 2017. In this episode, I’m joined by my brother, Jacob Frederick, to talk about his experience with my diagnosis and hospitalizations. 

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: 

Sillybug Studios:
sillybugstudios.com 

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

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. 

Allison Pullins

Allison Pullins

Allison’s son, James, was diagnosed with Marfan when he was 3 years old, following a lens dislocation. James is now 8 years old, and in this episode, Allison talks about his diagnosis story, how they handle communicating Marfan with James, research, navigating the US healthcare care system, 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 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

VEDS Collaborative Research Study: Send an email to vedscoll@ohsu.edu for more information on how to enroll.

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. 

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. 

Grace Barnhart

Grace Barnhart

Grace Barnhart was diagnosed with Marfan syndrome when she was 4 years old. She’s also a caregiver to her dad who has Marfan syndrome. In this episode, she talks about growing up with Marfan, getting involved in advocacy and community at a young age, medical events she’s dealt with of her own and of her dad’s, and how she lives her life as a young adult knowing she has Marfan.

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/

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. 

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. 

Mary Meyers

Mary Meyers

Mary Meyers’ daughter, Adalynn, was diagnosed with Loeys-Dietz Syndrome when she was about a year and half old. In this episode, Mary tells the story of Adalynn’s diagnosis following problems with feeding, food allergies, cleft palate, hypermobility, and more, as well as her experience as a parent learning to live with this diagnosis and become an informed advocate for her daughter. 

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/

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. 

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. 

Brent Tuinstra

Brent Tuinstra

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. 

Dominga Noe

Dominga Noe

Dominga Noe was diagnosed with Marfan syndrome at 9 years old following her father’s aortic dissection. Since her diagnosis, she’s become very involved in the community, and now runs the teen program as an employee of 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

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 programming 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.

Delaney Kinstner

Delaney Kinstner

Delaney Kinstner was diagnosed with Vascular Ehlers-Danlos Syndrome after a serious medical event 10 days after delivering her child caused her to be sedated and on ECMO for several weeks. 

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

VEDS Action Month and Costume Party:

https://thevedsmovement.org/events/vascular-ehlers-danlos-action-month/

Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming 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. 

Kristen St. John

Kristen St. John

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. 

Peter Donato

Peter Donato

Peter Donato, who was diagnosed with Loeys-Dietz Syndrome, or LDS, in fifth grade, shares his experience growing up with LDS, being involved in the community and the teen program at The Marfan Foundation, and its division, the Loeys-Dietz Syndrome Foundation, and adapting his love of sports to his life with LDS while maintaining his health. 

Find more information about LDS including support groups and medical webinars, at https://www.loeysdietz.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: 

The 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/

Positive Exposure 

https://positiveexposure.org/

Peter’s Twitter handle:
@petahchip19

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
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. 

Jacqui Fish

Jacqui Fish

Jacqui Fish, whose 24 year-old son George has vascular Ehlers-Danlos Syndrome (VEDS) shares her experience as mom and George’s experience with VEDS, including a number of serious medical events, including a bowel perforation, artery dissections, posterior reversible encephalopathy syndrome (PRES), and pneumothorax. 

Find more information about VEDS including support groups and medical webinars, at thevedsmovement.org 

Links mentioned in the episode: 

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

Real Talk: VEDS with Bella, the in_VEDS_tigator:
https://youtube.com/live/X5KDA7N-a44?feature=share 

Flyer for NW GAAP Symposium at OHSU on Sept 19: 
https://staying-connected.blubrry.net/wp-content/uploads/2023/08/Aortic-Dissection-Day-2023-Flyer.pdf

Registration:
form.jotform.com/232205213035136 

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/

The Ehlers-Danlos Society Genetically Defined EDS event in Ghent, Belgium: 
https://www.ehlers-danlos.com/event/genetically-defined-eds-strategies-solutions-for-unmet-needs/#tribe-tickets

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. 

Benjamin Weisman

Benjamin Weisman

In this episode of Staying Connected, we talk to Ben Weisman, who was diagnosed with Marfan syndrome at birth and is the third generation in his family to live with Marfan syndrome. Ben shares his story of growing up with Marfan, finding and building community, his involvement in the teen program at the Marfan Foundation, and his journey into politics.

Find more information about Marfan, including support groups and medical webinars, at marfan.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/

Links mentioned in the episode: 

Contact information and social media accounts for Ben can be found @ https://www.benforboonton.com/. You can also email Ben at bweisman@gmail.com

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. 

Mikala Tingley

Mikala Tingley

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. 

Maya Brown-Zimmerman

Maya Brown-Zimmerman

In this episode of Staying Connected, we talk to Maya Brown-Zimmerman, who was diagnosed with Marfan syndrome as a child. Because of her atypical features and medical events, her diagnosis was questioned several times and she was tested for VEDS and Loeys-Dietz before a genetic test revealed she does have an FBN1 mutation, associated with Marfan syndrome. In this episode, she shares her story with Marfan syndrome, advocacy, and her recent SCAD, or spontaneous coronary artery dissection. 

Find more information about Marfan syndrome, including support groups and medical webinars, at marfan.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. 

Ashton Tanner

Ashton Tanner

In this episode of Staying Connected, we talk to Ashton Tanner, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) about a year ago after a spontaneous coronary artery dissection, or SCAD, and her mother’s medical event a few weeks prior led to some puzzle pieces finally coming together.

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, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit 

https://staying-connected.blubrry.net/contact/

Links mentioned in the episode:

Patient Care Coordination Note for EPIC: Vascular Ehlers-Danlos Syndrome (VEDS), Loeys-Dietz (LDS), Marfan 

https://marfan.org/wp-content/uploads/2021/09/PCCN-Instructions_5.15.2020.pdf

Other Emergency Preparedness Resources for VEDS:

https://thevedsmovement.org/what-to-expect/emergency-preparedness/

Upcoming Events:

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

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. 

Trailer: Season 6

Trailer: Season 6

The voices you’ll hear in the upcoming season of Staying Connected, featuring community members who will be sharing their stories with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan syndrome, and Loeys-Dietz syndrome. Episodes available every other Saturday starting July 1, wherever you listen to podcasts.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie
Ashton Tanner

Elissa Hanneman

Elissa Hanneman

Elissa Hanneman was initially misdiagnosed with Classical Ehlers-Danlos Syndrome (CEDS) as a child, but a colon perforation during her pregnancy prompted genetic testing for Vascular Ehlers-Danlos Syndrome (VEDS). Years after her diagnosis, Elissa lost all of her intestines in a two-year hospital stay due to complications from VEDS.

Please be advised that in this episode, we discuss suicide and suicide intent. If you or someone you know needs help, there are resources available to you. In the US, you can get help by calling or texting 988, the Suicide and Crisis Lifeline, 24/7. If you are outside of the US, I’ve linked a list of hotlines and resources below.

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 mentioned in the episode

Suicide and Crisis Lifeline- US: Call or text 988, or visit:

https://988lifeline.org

International Suicide Hotlines

https://blog.opencounseling.com/suicide-hotlines/

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

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

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. 

Maria Vowles and Mandy Carpenter

Maria Vowles and Mandy Carpenter

Maria Vowles and Mandy Carpenter, who lost their daughter, Andie, to Vascular Ehlers-Danlos Syndrome (VEDS) and founded Adventuresinlove4Andie, join to talk about Andie’s story. In this interview, we will talk about Andie’s diagnosis of VEDS, what happened to her, and what Maria and Mandy have done with Adventuresinlove4Andie to raise awareness and support for VEDS. 

Please be advised that in this interview, we do go into detail about what happened to Andie that caused her death, which can be difficult to hear, and if you have VEDS or love someone with it, potentially triggering.

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 mentioned in the episode:

VEDS CME opportunities:
https://thevedsmovement.org/resources-and-answers/for-health-professionals/cme-vascular-ehlers-danlos/ 

AdventuresinLove4Andie:
adventuresinlove4andie.org  

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

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

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. 

The DiSCOVER Trial: Part 2

The DiSCOVER Trial: Part 2

Part 2 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Adrian joins to discuss the details of the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS  (Vascular Ehlers-Danlos Syndrome) in the United States. 

Learn more about the DiSCOVER Trial at discoverceliprolol.com 

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 mentioned in the episode:

DiSCOVER Trial:

discoverceliprolol.com 

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

Team VEDS- Pacific Northwest Walk for Victory

https://give.marfan.org/teamvedspnw

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

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. 

The DiSCOVER Trial: Part 1

The DiSCOVER Trial: Part 1

Part 1 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Chris joins to discuss the history of Edsivo, or celiprolol, and the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS  (Vascular Ehlers-Danlos Syndrome) in the United States. 

Learn more about the DiSCOVER Trial at discoverceliprolol.com 

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 mentioned in the episode:

DiSCOVER Trial:

discoverceliprolol.com 

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

Team VEDS- Pacific Northwest Walk for Victory

https://give.marfan.org/teamvedspnw

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

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. 

Jared Griffin

Jared Griffin

Jared Griffin, CEO and Founder of Annabelle’s Challenge, shares his experience with getting his daughter’s diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS), and experience starting Annabelle’s Challenge, a UK Charity for VEDS, more than 10 years ago.

Learn more about VEDS and Annabelle’s Challenge at https://www.annabelleschallenge.org/

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 mentioned in the episode:

Otto Nitschmann, who passed away April 20, 2023, shares his story with VEDS
https://staying-connected.blubrry.net/2022/04/16/otto-nitschmann/

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

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

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.

Emily Ranta

Emily Ranta

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.

Toni Harrison

Toni Harrison

Today we are gong to hear from Toni Harrison, who was initially diagnosed with hypermobile EDS. After an event, she received genetic testing that showed she actually has VEDS. In this episode, she is going to share her experience and how her VEDS diagnosis impacts her life. 

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

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.

Clare Stacey

Clare Stacey

Today we are gong to hear from a member of our community in the UK, Clare Stacey, who was diagnosed with VEDS following her mother’s death when Clare was 14 years old. In the episode, she is going to share how her understanding of and interaction with her VEDS diagnosis has changed as she has gotten older and dealt with medical events of her own. 

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 mentioned in the episode:

The Rare Disease Podcast 4 Medics: Not Just Hypermobility

https://podcasts.apple.com/us/podcast/not-just-hypermobility/id1591571033?i=1000562501357

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

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

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.

Trailer: Season 5

Trailer: Season 5

Clips from the upcoming season of Staying Connected, available on March 25 wherever you listen to podcasts.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, 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.

What Medical Professionals Should Know about VEDS

What Medical Professionals Should Know about VEDS

Over the last few seasons of Staying Connected, I’ve asked some of our community members living with or caring for loved ones with Vascular Ehlers-Danlos Syndrome (VEDS) what they think medical professionals should know about VEDS. This special episode is a compilation of some of those responses.

There are several organizations providing information and support for people affected by VEDS and medical professionals. Some of those are The VEDS Movement, Annabelle’s Challenge, and the Ehlers-Danlos Society. I encourage you to visit their websites and learn more.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, 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.

Katy DeCoursey

Katy DeCoursey

Katy’s husband, Mike, and her son were diagnosed with VEDS in 2020. In this episode, Katy shares her perspective as a spouse and a mom of loved ones with this condition.

These episode show notes will be updated with a link to the kids book, “Wonderfully Made,” once it is available on Kindle.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, 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.

Kelly Gann

Kelly Gann

In today’s episode, we’re going to talk to Kelly Gann, who was diagnosed with VEDS in 2009, when she was in Physician Assistant (PA) school. Kelly shares how she coped with that diagnosis, how her life has changed since then, and how her experience has changed now that her sister, Cristy, has also been diagnosed.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, 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.

Tyler Farley

Tyler Farley

In today’s episode, we’re going to talk to Tyler Farley, who was diagnosed with VEDS following a bowel perforation when he was 17. The VEDS diagnosis explained many things for Tyler, including the early death of his father, but also was a really challenging diagnosis to get when he was about to go into college.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, 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.

Samantha Arche

Samantha Arche

In today’s episode, we’re going to talk to Samantha Arche, who was diagnosed with VEDS following a uterine rupture during the delivery of her second child. Samantha was concerned that she might have VEDS prior to this, but struggled to get genetic testing.

In the episode I mentioned the prior interview with Meg Boeglin, which is available here: https://staying-connected.blubrry.net/2020/01/26/meg-zoe-and-izaak/

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, 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.

Cristy Gann

Cristy Gann

Cristy Gann was diagnosed with VEDS after her son Hunter died of an aortic dissection last year, in September of 2021. Hunter was only 14 years old. In this interview, Cristy shares what happened to Hunter, signs of VEDS that were missed in both her and Hunter, and how she is handling her own diagnosis.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

The views, information or opinions in the blog, podcast, 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.

Follow-up with Jeremias Tays

Follow-up with Jeremias Tays

In today’s episode, we’re going to touch base with Jeremias Tays, who was on the podcast back in 2019. He’s going to share his experience and insights over the last three years, as well as his experience with a bowel perforation that occurred in November 2021.

The original interview with Jeremias in 2019 can be found at https://staying-connected.blubrry.net/2022/10/01/follow-up-with-jeremias-tays/ and on all major podcast players.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Big thank you to my top tier patrons!
Jon Holtom
Kacey Keegan

Sarah Fulop

Sarah Fulop

Sarah Fulop was diagnosed with VEDS, or vascular Ehlers-Danlos Syndrome, after her sister died from complications following a pregnancy. Her brother also died of an aortic dissection at age 15, when she was about 3 years old. While her family is in some ways the textbook case of VEDS, they inherited the condition through a mosaic mutation, which made the diagnosis harder to recognize. In this interview we’ll be take a dive into the feelings she’s been navigating with her VEDS diagnosis, including survivor’s guilt and medical PTSD.

In this episode, we referenced the CardioNerds podcast episode about Sarah’s sister, Lizzie Gasser. You can listen to that podcast episode here: https://www.cardionerds.com/127-a-family-touched-by-vascular-ehlers-danlos-syndrome-the-life-legacy-of-lizzie-gasser/

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan

Trailer: Season 4

Trailer: Season 4

This season we are going to talk to 7 members of our community about their stories and experiences with VEDS. We’ll hear from several people who have a VEDS diagnosis themselves, including a mom who lost her son to VEDS last year, as well as a spouse and mom of people with VEDS. We also have a returning guest to talk about his experience since our last interview together, about three years ago.

Season 4 starts on September 17 and will be available on all major podcast players and on YouTube.

This podcast is not produced or affiliated with The Marfan Foundation or The VEDS Movement.

Thank you to my Patrons for supporting this show.

Connected Patrons:

Jon Holtom
Kacey Keegan

Support the show by joining my Patreon at patreon.com.translucentone

Dr. Shaine Morris

Dr. Shaine Morris

Dr. Shaine Morris, pediatric cardiologist and researcher at Texas Children’s Hospital, and advocate for our VEDS community, shares how she got involved with the VEDS community and talks about her current research, the CLARITY registry.

To enroll or get more information about the CLARITY study mentioned in this podcast, email Shaine’s research coordinator, Nadia, at nxespahb@texaschildrens.org

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

Thank you to my Connected Patrons for supporting this show and content about VEDS! Connected Patrons:
Jon Holtom

Charlene Terrell-Newman and Luke

Charlene Terrell-Newman and Luke

Charlene’s son, Luke, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 4, after persistent issues with bruising and bleeding led to a hematologist and a diagnosis of Von Willebrand’s at 2 years old, and then later, a rheumatologist who sent him to a genetic counselor who recognized VEDS at 4 years old. Luke was the only one in the family with VEDS.

Heartbreakingly, Luke passed away in October 2021 at the age of 15. Charlene tells us about Luke and his story with VEDS in this interview, and also talks about the emergency and mismanagement in the hospital that resulted in his death. An autopsy revealed he had experienced an aortic dissection and rupture.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

Thank you to my Connected Patrons for supporting this show and content about VEDS! Connected Patrons:
Jon Holtom

Dominick Corso

Dominick Corso

Dominick Corso was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 44, after a sudden medical emergency that identified three aneurysms: two iliac artery aneurysms and an abdominal aortic aneurysm. This event led to his doctors suspecting a connective tissue condition and sending him to a geneticist who ultimately diagnosed him with VEDS.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Grace Ehrbar

Grace Ehrbar

Grace Ehrbar was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, at 12 years old after a spontaneous bowel perforation. She is the only person in her family with VEDS. In this episode, Grace shares her experience with the bowel perforation when she was 12, as well as how her knowledge and attitude towards VEDS has changed in adulthood as she learned more about it. She also shares how her diagnosis has impacted her experience and career in the medical field.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

Otto Nitschmann

Otto Nitschmann

Otto Nitschmann was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 30, after he experienced a sudden splenic artery rupture. This event, combined with his hypermobile joints and his dad’s early death from a brain aneurysm, led his rheumatologist to consider VEDS and order a genetic test.

You can reach out to Otto through his Facebook page, https://www.facebook.com/otto.nitschmann

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Heidi Green

Heidi Green

Heidi Green’s daughter, Isabella, was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2021 when she was 8 years old. For years Heidi asked her pediatrician about problems Isabella had, but was told these things were likely due to her being born premature. When she pushed for genetic testing in 2021, she finally got the answer.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Christopher Underwood

Christopher Underwood

Christopher Underwood was diagnosed with VEDS at the age of 52, after surviving an aortic dissection and complications following the dissection, including the amputation of the front half of both of his feet. His mother died of an aortic dissection at the age of 82, and his cardiologist recommended he get tested for VEDS. In this episode Chris tells us about what he went through with his aortic dissection and complications that followed, and how he’s coped with his diagnosis and the amputations.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

Karen DeCoursey

Karen DeCoursey

Karen DeCoursey was diagnosed with VEDS following her brother, Mike’s, diagnosis in 2017. For Karen, the diagnosis offered answers for many unanswered medical questions in her life, as well as the answer for her father’s death at the age of 49. In this episode, Karen talks about what she went through before and after her diagnosis, including feeling like she was a hypochondriac for many years of her life.

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

Jonathan Kile

Jonathan Kile

Jonathan Kile was diagnosed with VEDS in 2016 following a series of life-threatening emergencies, including an iliac artery rupture and an aortic dissection. His diagnosis at the age of 42 also offered an explanation for his mother’s early death when he was 5 years old. In this episode, Jon talks about what he survived, how he copes with his diagnosis, and how he feels about the diagnosis of his two kids.

You can keep up with Jon through his blog at www.dontmakemeturnthisvanaround.com

Find more information about VEDS, including support groups, an emergency preparedness kit with a wallet card, and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, let me know here. I look forward to hearing from you!

Lise Voje-Johanson

Lise Voje-Johanson

Lise Voje-Johanson’s daughter, Karna, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) when she was 8 years old in 2019, after her father, Trond, was diagnosed. Lise shares her experience getting and coping with Karna’s diagnosis, as well as information about the medical system in Norway.

This podcast episode is dedicated to Trond, who lost his life to VEDS on October 16, 2021, after the recording of this interview.

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Dr. Melissa Russo

Dr. Melissa Russo

Dr. Melissa Russo is a maternal fetal-medicine specialist, clinical geneticist, and researcher in our VEDS community. In this episode, Melissa shares how she got involved, what she’s working on in research, what inspires her, and her personal experience losing a friend to VEDS.

Melissa is pursuing additional research collaborations with Dr. Bart Loeys in Europe, Dr. Shaine Morris in Texas, and Dr. Sherene Shalhub in Washington to better understand pregnancy outcomes for people with VEDS, and for people who have had children with VEDS who do not have VEDS themselves.

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Ashley Rose Marisch

Ashley Rose Marisch

Ashley Rose Marisch was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2017, after previously being diagnosed with FMD, or fibromuscular dysplasia. Her sister, Allyson Jane, ultimately continued researching their family’s experience and history and pushed for the genetic testing for VEDS that led to Ashley Rose, Allyson Jane, and their mother, Dawn, to be diagnosed. Allyson Jane passed away in 2020 of a ruptured aortic dissection. In this episode, Ashley Rose shares her experience getting diagnosed, and how she copes with the diagnosis and the loss of her sister.

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Mike DeCoursey

Mike DeCoursey

Mike DeCoursey was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2016 following the diagnosis of his son. The diagnosis came with an explanation for his father’s death at the age of 49 to a ruptured aortic aneurysm- something he had been told did not have a genetic cause. You can read more about his efforts to raise awareness and funds for VEDS at walkwithdeco.com.

There are a few support groups out there for people affected by VEDS, both through The VEDS Movement and the Ehlers-Danlos Society. You can find support groups through The VEDS Movement at thevedsmovement.org/supportgroups and through the Ehlers-Danlos Society through their website at Ehlers-Danlos.com. You can also reach the nurse at The VEDS Movement Help and Resource Center at thevedsmovement.org/ask

Cathy Bowen (Dave’s Mom)

Cathy Bowen (Dave’s Mom)

Cathy Bowen tells us about her son, David Daniel Bowen III, and the colostomy reversal that ultimately took his life in 1996 at the age of 14, due to medical mismanagement and the hospital’s lack of knowledge about Vascular Ehlers-Danlos Syndrome (VEDS). Dave’s death left Cathy an empty shell, and she dealt with his loss by putting the love she had for her son towards others with VEDS. She had also made Dave a promise, that this would be her lifelong mission. Shortly after his death, she started advocating for people with VEDS with other mothers. She worked with the EDS National Foundation (now known as the EDS Society) and opened a local branch in New Jersey.  A few years later she co-founded EDS Today, which began as a newsletter for people in the EDS community sharing news and publications about all types of EDS. She was also a member of the original VEDS yahoo email support group back in 1996, which is now the VEDS Facebook group.

Read more about Dave and Cathy’s story, and the Bowen story, here: http://edstoday.org/david-daniel-bowen-iii/

You can also read Dave’s poem, which was read on this podcast, here: https://fibromusculardysplasia.blogspot.com/2013/12/today-i-want-to-share-with-you.html

Find more information about the VEDS Collaborative Natural History Study and enroll at https://redcap.iths.org/surveys/?s=LTWWDAC3XJ

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Erik

Erik

Erik was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) four years ago at the age of 43, after a spontaneous renal artery dissection that occurred while he was at work. He talks about how he got to his diagnosis, ways his life has changed since, and how he stays positive.

Erik’s family runs an annual chili cook-off event to raise awareness for rare conditions and diseases, called “Chillin for a Cure.” You can find more information about their event on their facebook page, here https://www.facebook.com/Chillin-for-a-Cure-379482395942307

If you are looking for more information about VEDS and support, there are great resources at The VEDS Movement, https://TheVEDSMovement.org. This podcast is not produced by or associated with The VEDS Movement.

Rebecca

Rebecca

Rebecca was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) in 2016, when she moved to Boston and met doctors who immediately put her medical history together- a history of a renal artery dissection, and two coronary artery dissections, one of which caused cardiac arrest, in an otherwise healthy young woman. In this episode, Rebecca shares her diagnosis story, coping strategies, and ways her life has changed since.

If you are looking for more information about VEDS, there is great information at thevedsmovement.org. This podcast is not associated with The VEDS Movement.

Dawn S.

Dawn S.

Dawn was diagnosed with VEDS in 2009, and is now 62 years old. Even though her mom passed away at 38 from an aortic rupture when Dawn was just 8 years old, it wasn’t until after a spontaneous rectal hematoma when she was 51 that her team was able to put the pieces together. In this episode, Dawn shares her experience with her diagnosis, and what she has been through since.

You can learn more about VEDS and find support groups at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement.

Matthew

Matthew

Matthew was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in 2020, when after years of struggling to get answers, he came across characteristics of VEDS, including sleeping with his eyes open, on The VEDS Movement website in early 2020. Knowing he had so many of the characteristics, and previously had been dismissed by a geneticist, he sought after answers again with a second geneticist. His genetic test came back positive for VEDS in the summer of 2020.

Matthew shares his story, and how he processed the information of his and his mom’s diagnoses while also living through the pandemic.

You can learn more about VEDS and find support groups at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement.

Melinda and Nataleigh

Melinda and Nataleigh

Melinda’s 11 year-old daughter, Nataleigh, was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, after 8 1/2 years of medical issues that finally led to a genetics appointment. At first, she was diagnosed with hypermobile EDS, but Melinda pushed for a genetic test to rule out VEDS and she unexpectedly came back positive.

Melinda shares what kind of complications Nataleigh lives with, including POTS, Chiari malformation, a tethered cord, chronic pain, and gastrointestinal issues, as well as how they’ve coped over time with these issues and the VEDS diagnosis.

To learn more about VEDS, or get connected with others who have it, visit thevedsmovement.org.

This podcast is not affiliated with The VEDS Movement.

Morgan and Cameron

Morgan and Cameron

Morgan’s son, Cameron, was diagnosed in July 2019 with Vascular Ehlers-Danlos Syndrome (VEDS), at 10 years old. This diagnosis came after Morgan continued to press for answers several years after his father, Mike, passed away from a sudden aortic dissection.

Morgan shares how they’ve coped with the diagnosis, as well as the advocacy work she has done to raise awareness and fundraise for VEDS.

You can learn more about VEDS and get involved in The VEDS Movement by reaching out at TheVEDSMovement.org

Patrick

Patrick

Patrick was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) earlier this year by the National Institutes of Health (NIH) at 54 years of age following whole exam sequencing. With a history of bowel complications and perforations, as well as two other rare conditions, Patrick was grateful to be welcomed by the VEDS community when he was diagnosed. He talks openly about his medical history and family medical history, while also discussing how he’s handled the diagnosis in the last few months and his search for a new normal.

Resources Patrick talks about in this episode are the VEDS support groups through TheVEDSMovement.org, as well as the VEDS Facebook group.

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Danjela

Danjela

Danjela received her diagnosis of Vascular Ehlers-Danlos syndrome, or VEDS, just two months prior to the recording of this podcast. After her mom suddenly died of an aortic rupture, Danjela started researching and discovered Vascular EDS. She pushed her doctors for genetic testing, which took a couple months of convincing, but her test results came back positive for VEDS and she is the only one in Austria that she knows with VEDS.

Danjela always felt like there was an underlying condition that affected her, her mom, and her grandfather, so when she received her diagnosis, it was a relief to know and be able to prepare for emergencies and adjust parts of her care plan. She has continued to live her life passionately, and shares her story of carotid artery dissections and close calls with incredible positivity.

Erica

Erica

Erica was diagnosed with Vascular Ehlers-Danlos syndrome, or VEDS, about eight and half years ago after a series of life-threatening medical events and the birth of her son, Reed. She discusses her colon ruptures, uterine rupture, and the discovery of 5 aneurysms that finally led to her diagnosis of VEDS. She talks about how her faith, her husband, her son, knowledgeable doctors, and a supportive community have helped her persevere and live positively despite of her diagnosis with VEDS.

Daniel

Daniel

Daniel was diagnosed with VEDS (Vascular Ehlers-Danlos syndrome) in January 2020, after an emergency surgery for an abdominal aortic aneurysm (AAA) in October 2019. The AAA and other complications during and after the surgery led the vascular surgeon to believe Daniel had an underlying connective tissue condition. He saw a geneticist shortly after this emergency surgery, who ordered a genetic test and diagnosed him with VEDS. Daniel shares his story of diagnosis and how he’s handling it from the perspective of someone very newly diagnosed.

Emma

Emma

Emma was diagnosed with VEDS when she was 20 years old, not long after losing her brother and father to VEDS in the same year. She grew up knowing that VEDS was in her family; seven people, including her, have now been diagnosed. With the decision to be genetically tested left up to her, it was her brother’s sudden passing at 25 that led her to do so.

She tells the story of how she was diagnosed, what it was like knowing this was in her family growing up, and the anxiety that comes with living with VEDS. She also tells us how she met Justin, her husband, and their decision to start the Defy Foundation together as college students.

Karly and Chase

Karly and Chase

Karly’s son Chase was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) three years ago at 2 years old. Chase had experienced several broken bones with minimal injury, and originally the physicians were concerned he might have Osteogenesis Imperfecta. Karly shares her experience getting the diagnosis of VEDS and what that meant for Chase’s future. Since then, Chase has been hospitalized for bowel complications several times, but he is a resilient young boy, and as parents, Karly and her husband try to surround the medical experiences with positivity.

Karly also raises awareness of VEDS through a playlist on her youtube channel, Karly’s Kreations. https://www.youtube.com/channel/UCg3XlExCbddWLRVaG2_-TGA

Don’t forget, REDS4VEDS Day is May 15th this year! Wear red and share the hashtag #REDS4VEDS!

Lucy

Lucy

Lucy was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) after a close call with death; a ruptured splenic artery. She was lucky to survive, and during that event the surgeons also found several other aneurysms in her body. She received genetic confirmation of VEDS 8 months later. One of her daughters, Zaria, who is now 8 years old, was also diagnosed. Lucy tells her story with VEDS all the way from New Zealand!

To connect with others with VEDS and get more information about the condition, visit thevedsmovement.org

This is a special episode leading up to REDS4VEDS Day on May 15th! Join us by wearing red, sharing a picture, and using the hashtag #REDS4VEDS!

Mariah

Mariah

Mariah was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) after a OBGYN recommended she look into it following a hysterectomy. Previously, a CT had revealed an abdominal aortic aneurysm, ileac dissections and a renal dissection after her appendix ruptured, but her doctor did not think it was anything congenital. When she later received the genetic confirmation of VEDS, it explained many things about her body that she struggled with throughout the years.

Mariah shares in this episode some of her medical story, but really focuses on the emotional aspects of living with VEDS. She also talks about some of the body hate she has experienced over the years.

If you want to connect with Mariah, reach out to me here. 

Megan

Megan

Megan’s brother suddenly passed away at the age of 39 years old in January of 2018. Her and her father found out later that he passed from an aortic dissection, and the coroner recommended that family members make sure it wasn’t due to a genetic condition.

After finding out that she also had an aortic dissection and ileac dissections, she got a blood test and was confirmed to have VEDS (Vascular Ehlers-Danlos Syndrome) in June of 2018. Her children were tested, and her son was also confirmed to have VEDS. Now she knows her brother and mother likely also had the condition.

Megan shares how the diagnosis explained some things about her body, as well as how she copes with the diagnosis for herself and her son.

Thank you, Megan for sharing your story!

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Patrick and Jessica (Coggins) Westmoreland

Patrick and Jessica (Coggins) Westmoreland

Jessica (Coggins) Westmoreland passed suddenly from complications due to VEDS in September 2019 at the age of 27 years old. Patrick Westmoreland, her husband, shares their story and the legacy she left behind in this special episode. Jess was a bright light for those around her, and a force to be reckoned with.

Thank you, Patrick for sharing her story and light with all of us.

If you have VEDS and have not reached out for support, please check out TheVEDSMovement.org for wonderful resources to help you on your journey.

Jenny

Jenny

Jenny was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) in January 2019 after finding out she had several dissections in her vertebral and carotid arteries. Even then, her doctors did not suspect VEDS and she was shocked when her genetic test came back positive. She explains in this episode how her diagnosis explained some of the medical mysteries in her history, and shares her experience dealing with the diagnosis.

If you have VEDS and have not connected with someone else who has it, please check out thevedsmovement.org for ways to connect! It is such a wonderful resource!

Meg, Zoe, and Izaak

Meg, Zoe, and Izaak

Meg shares her diagnosis story with Vascular Ehlers-Danlos Syndrome (VEDS), and talks about how it has impacted her perspective on life and parenting, and career as a nurse. She was diagnosed with VEDS 9 years after a life-threatening maxillary artery aneurysm. Following her diagnosis, her daughter Zoe was diagnosed and she became pregnant with her second child, Isaak, who also has VEDS.

Meg has become an amazing advocate for others with VEDS through volunteering her time and through her career.

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Bradley

Bradley

Bradley was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) a day before his 47th birthday, and a few years after his younger brother passed from an aortic aneurysm. Just a month after his diagnosis with VEDS, he himself suffered an aortic dissection and survived, despite the odds!

Bradley has been through so much since diagnosis, and I am so grateful that he came onto the show to tell his story. Just a year ago, he woke up from the medically induced coma from his life-saving surgery.

This episode was recorded on December 23rd, 2019.

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Happy holidays!

Joy (Katie’s mom)

Joy (Katie’s mom)

This is a special episode where I talk to my mom about the medical mysteries when I was growing up, and how it felt when we finally got the diagnosis of Vascular Ehlers-Danlos Syndrome (vEDS) at the age of 28 years old.

The beginning of this episode really focuses on the medical aspects of me growing up, while the second half focuses on how we coped with the diagnosis as a mother and daughter.

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Heather

Heather

Heather was diagnosed with vEDS after several back-to-back medical events in 2015, including a kidney infarction and a carotid cavernous fistula. She had also previously had a colon rupture and an early delivery of her son. Luckily, an ER doc from Paris noticed the signs of vEDS during an emergency room visit. She had complications throughout her life that pointed to vEDS, but these had gone unrecognized. Her mother had also passed away at 37 unexpectedly with no explanation. Heather’s diagnosis with vEDS has provided some explanation for her mother’s death, as well as given her perspective to live her life the fullest.

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Abby and Jon

Abby and Jon

Abby’s son, Jon, was diagnosed several years ago with vEDS at the age of 2. He had been to 7 different doctors by the time Abby pushed for a genetic consult, and even then, the first geneticist said there was nothing wrong. Jon would get bruises just from a diaper change, and had a lot of skin splitting that pointed to vEDS. He also has some bad gastrointestinal issues, like many of us with vEDS can relate to. He is now 7 years old and is a hoot!

Abby spends a lot of time advocating for members of our community and it was amazing getting to hang out with her so much this summer!

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Jeremias, Miles and Henry

Jeremias, Miles and Henry

Jeremias was diagnosed with vEDS after they got the diagnosis for Miles, one of his three children who is now 9 years old. One of his other kids, Henry, was also diagnosed at that time. If his wife, Rachel, had not pushed for a diagnosis, they likely would not have the answers they have today.

Jeremias is 33 now and has been fortunate to have few life-threatening complications so far. He has had a lot of lung issues, and a partial collapsed lung during a bout of bronchitis earlier this year. They’ve gotten a plan set up at school for the teachers to follow in case of emergencies for Henry and Miles and have good docs in Texas that follow them!

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Also, if you have genetically confirmed vEDS and are 18+, please consider enrolling in the vEDS Collaborative Natural History Study. vedscollaborative.org/get-involved

Dr. Sherene Shalhub

Dr. Sherene Shalhub

Sherene Shalhub is a vascular surgeon who has been working with patients with Vascular Ehlers-Danlos Syndrome (vEDS) alongside Dr. Peter Byers, who was also featured in a special episode of Staying Connected last month.

Sherene took some time during our weekend at the Marfan Foundation Annual Conference to talk to me about her story and experience with vEDS, including her work to further research and human connection through the vEDS Collaborative. She has been an amazing advocate for those with vEDS, and has become family to me.

If you want to enroll in the vEDS Collaborative Natural History Study, visit vedscollaborative.org/get-involved

If you have vEDS and want to be on this podcast, or just want talk to someone else with vEDS, reach out to me at thetranslucentone@gmail.com

Jennifer and Cade

Jennifer and Cade

Jennifer’s son Cade was diagnosed with vEDS (Vascular Ehlers Danlos Syndrome) at 14 years old as an incidental finding following exome sequencing for autism. Jennifer had not heard of vEDS prior to the call from the genetic counselor, but had previously had Cade evaluated for Marfan Syndrome (for which he tested negative).

Cade is now 16 years old and recently got to meet others his age at the Marfan Annual Conference earlier this month.

Learn more about the vEDS Natural History study here: https://www.vedscollaborative.org/news

Dr. Peter Byers

Dr. Peter Byers

Dr. Peter Byers has been an integral part of the Vascular EDS (VEDS) community since the 1970s, and has become part of the family to many of those affected by vEDS.

In this special episode, Peter shares his history with vEDS and excitement for progress for the community that is happening now.

This episode was recorded live on 7/13/19 in Houston at the Marfan Foundation Annual Conference. You can even hear the air conditioning at the hotel wake up part way through the episode! 😉

If you want to learn more about the vEDS Collaborative and enroll in the research study, visit vEDSCollaborative.org.

If you want to be a part of this podcast, or have genetically confirmed vEDS and have not been integrated into our group, reach out at thetranslucentone@gmail.com.

Chris

Chris

Chris was diagnosed in 1995 with Vascular Ehlers-Danlos Syndrome following his father’s passing. Chris was 22 when he lost his dad and found out he had vEDS. He is now 46 years old and has had two major knee surgeries, a ministroke (transient ischemic attack, or TIA), a fistula, multiple vein ruptures, and lives with a ostomy bag resulting from a bowel perforation in 2014.

You can follow Chris on Twitter: @Van_Tater

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Kristi

Kristi

Kristi was diagnosed with vEDS after her father died when she was 5 years old. She is now 45 and has had several complications, including a colon rupture. She has also had to learn to stand up for herself with doctors- a struggle many of us can relate to!

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Bella

Bella

Bella wanted to do this special episode for #Reds4VEDS Day this year!

She was diagnosed with vEDS (Vascular Ehlers-Danlos Syndrome) when she was 10 years old and is now 25. Recently, she had a seizure and dislocated both of her shoulders and suffered fractures as well from the seizure. She’s also had bowel and other complications from vEDS.

Today we are wearing red to raise awareness for vEDS. Wear red, take a picture, and share with the hashtag #REDS4VEDS!

Lynley

Lynley

Lynley is 21 years old and was diagnosed with vEDS (Vascular Ehlers Danlos Syndrome) following a lung collapse, or pneumothorax. Her dad also had vEDS, which was a clue in for the diagnosis. She tells us her story with vEDS and various issues she has had over the years, including a retina detachment, and how her outlook has changed since diagnosis.

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Sarah and Andrew

Sarah and Andrew

Sarah shares her 5 year old son Andrew’s diagnosis story, and challenges along the way.

In this episode we also briefly talked about variances in outcomes with vEDS (Vascular Ehlers Danlos Syndrome) depending on mutation type. The video by Dr. Byers explaining the mutation types is here on youtube: https://youtu.be/ZVnWiNR6bdY

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Ed

Ed

Ed wasn’t diagnosed with vEDS (Vascular Ehlers Danlos Syndrome) until after he survived open heart surgery. Like many, the diagnosis brought answers to his life, but also came with many challenges.

If you like this podcast and want to hear more, be sure to subscribe!

Find more information about VEDS, including support groups and medical webinars, at TheVEDSMovement.org. This podcast is not associated with The VEDS Movement or The Marfan Foundation.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

My Story

My Story

As a twist, in this episode my friend Becca asks me about my story!

If you want to check out what I’ve been up to, you can find a link to my youtube

youtube.com/translucentone

Don’t forget to subscribe to this podcast to hear more patient stories with Vascular Ehlers Danlos Syndrome!

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Emily

Emily

Emily was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) after a misdiagnosis of Classical EDS and the passing of her mother, who also had vEDS and was not properly diagnosed. Emily still finds joy in music, and continues to play for her mom. <3

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Chrystal

Chrystal

Chrystal was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) along with her mother and brother. She has survived a pregnancy and is the last surviving member of her family who has vEDS. She was an inspiring person to talk to! <3

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Brook

Brook

Brook had years of complications that pointed towards vEDS, or Vascular Ehlers Danlos Syndrome, but it wasn’t until his 40s that he was finally diagnosed. He has been through so much and his story is inspirational!

Stay tuned for more episodes on the last Sunday of every month!

 

Carla

Carla

Carla and her daughter Effie were diagnosed with vEDS after Effie was put into foster care for suspected abuse. It wasn’t until Effie and Carla got diagnosed with vEDS that Carla and her husband were able to get her back.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Aaron

Aaron

Aaron is 33 and was diagnosed a year and a half ago with vascular Ehlers Danlos Syndrome (vEDS). He tells us his story of diagnosis and events that he has experienced so far. He also tells us about his father’s story with vEDS, which was undiagnosed when he passed away two years ago.

This interview was done in person over the weekend that the vEDS collaborative met in Seattle.

To make a donation to the vEDS Collaborative, https://app.mobilecause.com/vf/vEDS

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Annie

Annie

In this episode I talk to Annie, who was diagnosed clinically with vEDS at 8 years old and officially diagnosed at 14.

Annie is the first person I have met in person with vEDS and she is amazing! It is such a gift to be able to get to know her 🙂

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Shannon

Shannon

Today I talk to Shannon, who was diagnosed with both the vascular and classical types of Ehlers Danlos Syndrome. She is just shy of 32 years old and has lived through 32 surgeries related to complications from EDS!

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

Bridgette

Bridgette

Welcome to the first episode of Staying Connected!

I started Staying Connected as way to connect with other people diagnosed or impacted by vascular Ehlers Danlos Syndrome (vEDS).

In today’s episode, I talk to Bridgette, who was diagnosed in her early twenties following an angiogram that went terribly wrong. She needed twelve surgeries to save her life from the angiogram, which was intended to get a better look at her carotid cavernous fistula.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!