Staying Connected

Today, we’re going to talk to Carlos Morales, who lost one of his children, Kaitlyn, to an aortic dissection in 2023 at the age of 14. This aortic dissection led to their diagnosis of Loeys-Dietz syndrome type 2, and also revealed that Carlos has Loeys-Dietz syndrome, mosaically. 

Quick note: In this episode, Carlos will share in detail what happened to Kaitlyn. Please listen with care. 

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org

Links to resources, events, and research opportunities: 

VEDS Collaborative Research Study: Email [email protected] 

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

Listener Survey

https://www.surveymonkey.com/r/8W37WKN

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 

You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8, or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

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

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source

Today, we’re going to talk to Carmen David, who is going to share her experience with an aortic dissection after the delivery of her second daughter, her experiences recovering from that physically and emotionally, how she handled the information of two VUS’s, or Variants of Unknown Significance, and what she’s been doing since her dissection to raise funds for research. 

Links mentioned in the episode:

* Runforaortichealth.com

* Johnritterfoundation.org

* Aortichope.org 

* Aortic Dissection Collaborative https://www.pcori.org/research-results/2022/community-led-research-development-aortic-dissection-collaborative

*https://improvead.org/

*Aortic Athletes Facebook Group https://www.facebook.com/share/18CNWsphrL/

*AD in Pregnancy/PostPartum Facebook Group https://www.facebook.com/groups/1282484088538178/?ref=share&mibextid=NSMWBT

*contact for Carmen David, regarding the run event [email protected]

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source

Today, we’re going to talk to Bella Marin, who was previously on the show to talk about her story with VEDS, or Vascular Ehlers-Danlos syndrome. In today’s episode, she is returning to the show to talk about her recent experience with a bowel perforation and resulting complications.

Bella can be found at @in_VEDStigator on Facebook, and @in_VEDS_tigator on Tik Tok and Instagram

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org

Links to resources, events, and research opportunities: 

VEDS Collaborative Research Study: Email [email protected] 

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

Listener Survey

https://www.surveymonkey.com/r/8W37WKN

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 

You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8, or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

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

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source

In this episode, we talk to Marisa Hart, who was diagnosed with Marfan syndrome as a child. Marisa has an extensive family history and shares how Marfan has impacted her life, from sports, to seeing family members deal with Marfan, and her daily life and own surgery for pectus excavatum. 

Content warning: Brief discussion of suicide.

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source

Today we’re going to talk to Tammy Asplund about her story with Loeys-Dietz syndrome, which she was diagnosed with at 52 after her son found out he had an aneurysm and also needed open heart surgery. Once he was diagnosed, it explained their family history and Tammy got tested and had open heart surgery as well. 

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org

Links to resources, events, and research opportunities: 

VEDS Collaborative Research Study: Email [email protected] 

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

Listener Survey

https://www.surveymonkey.com/r/8W37WKN

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 

You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8, or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

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

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source

Today we’re going to talk to Ryan Rodarmer, the director of The VEDS Movement, about his personal experience with aortic aneurysm and dissection, and his career as a genetic counselor working with connective tissue conditions and VEDS prior to his role at 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. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org

Links to resources, events, and research opportunities: 

VEDS Collaborative Research Study: Email [email protected] 

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

Listener Survey

https://www.surveymonkey.com/r/8W37WKN

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 

You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8, or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

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

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source

Claudia Arbelaez joins the show to share her story with Vascular Ehlers-Danlos syndrome (VEDS), which she was diagnosed with in 2020 after a kidney infarction and vascular rupture. A couple years after her diagnosis, she also had a colon rupture. 

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org

Links to resources, events, and research opportunities: 

VEDS Collaborative Research Study: Email [email protected] 

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

Listener Survey

https://www.surveymonkey.com/r/8W37WKN

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 

You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8, or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

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

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source

Bridget Porter (Metz) joins the show to share her son, Connor’s, story with Loeys-Dietz syndrome, which he was diagnosed with after he died of an aortic dissection at the age of 13. Connor was seen by a geneticist a few years before he died, but was told there was no need for a genetic test. Bridget and her family have been involved in efforts to raise awareness and funds for research since his death in 2020.

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org

Links to resources, events, and research opportunities: 

VEDS Collaborative Research Study: Email [email protected] 

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

Listener Survey

https://www.surveymonkey.com/r/8W37WKN

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 

You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8, or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

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

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source

Today we will be hearing from Debbie Vaughan about her experience with Vascular Ehlers-Danlos syndrome (VEDS) and her late husband, Josh’s, story with VEDS. Josh passed away not long after their son was born. Near the end of the interview, we’ll also hear how she’s seen things change for people with VEDS in the last 27 years.

In the episode, we mentioned Ehlers-Danlos Type 6, which was misquoted as periodontal EDS. However, this is now known as kyphoscoliotic EDS.

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org

Links to resources, events, and research opportunities: 

VEDS Collaborative Research Study: Email [email protected] 

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

Listener Survey

https://www.surveymonkey.com/r/8W37WKN

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 

You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8, or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

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

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source

Today we’re going to hear from Melanie Case, who was diagnosed with Marfan syndrome in 2002, a couple years after she had a thoracic aortic dissection following the delivery of her second child. This aortic dissection went undiagnosed for about two years, and after it was discovered, it led to her diagnosis with Marfan syndrome. 

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org

Links to resources, events, and research opportunities: 

VEDS Collaborative Research Study: Email [email protected] 

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

Listener Survey

https://www.surveymonkey.com/r/8W37WKN

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 

You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8, or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone.

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

Jon Holtom
Adventuresinlove4Andie
Ryan Rodarmer
Benjamin Weisman
Fiona McIver

Source