Staying Connected – Staying Connected podcast

Treść dostarczona przez Katie Wright. Cała zawartość podcastów, w tym odcinki, grafika i opisy podcastów, jest przesyłana i udostępniana bezpośrednio przez Katie Wright lub jego partnera na platformie podcastów. Jeśli uważasz, że ktoś wykorzystuje Twoje dzieło chronione prawem autorskim bez Twojej zgody, możesz postępować zgodnie z procedurą opisaną tutaj https://pl.player.fm/legal.

State Secrets: Inside The Making Of The Electric State

1
Family Secrets: Chris Pratt & Millie Bobby Brown Share Stories From Set 22:08

21 dni temu22:08

Na później

Listy

Polub

Polubione

22:08

Host Francesca Amiker sits down with directors Joe and Anthony Russo, producer Angela Russo-Otstot, stars Millie Bobby Brown and Chris Pratt, and more to uncover how family was the key to building the emotional core of The Electric State . From the Russos’ own experiences growing up in a large Italian family to the film’s central relationship between Michelle and her robot brother Kid Cosmo, family relationships both on and off of the set were the key to bringing The Electric State to life. Listen to more from Netflix Podcasts . State Secrets: Inside the Making of The Electric State is produced by Netflix and Treefort Media.…

Staying Connected – Staying Connected explicit

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Źródło serii•Feed

with Vascular and Aortic Connective Tissue Conditions

117 odcinków

#Ehlers Danlos #Katie Wright #Fitness #Society #Conversations #Medicine

Staying Connected – Staying Connected explicit

updated rok temu

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Źródło serii•Feed

with Vascular and Aortic Connective Tissue Conditions

117 odcinków

#Ehlers Danlos #Katie Wright #Fitness #Society #Conversations #Medicine

Wszystkie odcinki

1
Carlos Morales, sharing Kaitlyn’s story 55:42

13 weeks temu55:42

55:42

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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Carmen David 58:24

14 weeks temu58:24

58:24

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 Runforaortichealth@gmail.com Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org , loeysdietz.org , and marfan.org . Also find more support for aortic dissection and ways to get involved through the John Ritter Foundation for Aortic Health, johnritterfoundation.org Links to resources, events, and research opportunities: VEDS Collaborative Research Study: Email vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support 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 Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Reconnecting with Bella Marin aka in_VEDS_tigator 58:21

15 weeks temu58:21

58:21

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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Marisa Hart 44:36

16 weeks temu44:36

44:36

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. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org , loeysdietz.org , and marfan.org . Also find more support for aortic dissection and ways to get involved through the John Ritter Foundation for Aortic Health, johnritterfoundation.org Links to resources, events, and research opportunities: VEDS Collaborative Research Study: Email vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support 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 Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Tammy Asplund 40:15

17 weeks temu40:15

40:15

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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Ryan Rodarmer 56:16

18 weeks temu56:16

56:16

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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Claudia Arbelaez 46:31

19 weeks temu46:31

46:31

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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome 1:06:33

20 weeks temu1:06:33

1:06:33

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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Debbie Vaughan, sharing Josh Doss’s story with VEDS 1:15:07

30 weeks temu1:15:07

1:15:07

Today we will be hearing from Debbie Vaughan about her experience with Vascular Ehlers-Danlos syndrome (VEDS) and her late husband, Josh’s, story with VEDS. Josh passed away not long after their son was born. Near the end of the interview, we’ll also hear how she’s seen things change for people with VEDS in the last 27 years. In the episode, we mentioned Ehlers-Danlos Type 6, which was misquoted as periodontal EDS. However, this is now known as kyphoscoliotic EDS. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org , loeysdietz.org , and marfan.org . You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities: VEDS Collaborative Research Study: Email vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Melanie Case 43:39

31 weeks temu43:39

43:39

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 vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Nancy Billon 47:21

32 weeks temu47:21

47:21

In this episode we’re going to talk to Nancy Billon, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) with a combination of her medical history and a genetic test that revealed a VUS on COL3A1. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org , loeysdietz.org , and marfan.org . You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities: VEDS Collaborative Research Study: Email vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Hugh Cox 51:09

33 weeks temu51:09

51:09

In this episode we’re going to talk to Hugh Cox, a member of the Vascular Ehlers-Danlos Syndrome community diagnosed just in 2022. He was first misdiagnosed with a clotting disorder. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org , loeysdietz.org , and marfan.org . You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities: VEDS Collaborative Research Study: Email vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Maggie Buckley 48:51

34 weeks temu48:51

48:51

In this episode we’re going to talk to Maggie Buckley, a long-time member of the community who was diagnosed with hypermobile EDS when she was a child. Recently, a genetic test revealed she has the gene mutation for Loeys-Dietz type 5. If you want to know what an okapi is, check out this info here. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org , loeysdietz.org , and marfan.org . You can also find information and resources through the John Ritter Foundation, johnritterfoundation.org Links to resources, events, and research opportunities: VEDS Collaborative Research Study: Email vedscoll@ohsu.edu Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events: https://marfan.org/calendar Join a Walk for Victory: https://marfan.org/walk/ Help and Resource Center https://marfan.org/ask https://loeysdietz.org/ask https://thevedsmovement.org/ask Support Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products You can make a one-time donation to Translucent One LLC at https://www.paypal.com/ncp/payment/7BAB4R3QAA4R8 , or you can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone . Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Erin Langley 47:42

35 weeks temu47:42

47:42

Erin Langley was tested for VEDS (Vascular Ehlers-Danlos Syndrome) due to some concerning family history, but her results came back as a Variant of Unknown/Uncertain Significance, or VUS. In this episode, she shares her experience with those results and how she’s found support in the meantime. Link to the articles mentioned in the interview: The known unknown: the challenges of genetic variants of uncertain significance in clinical practice https://academic.oup.com/jlb/article/4/3/648/4820755 Mother’s Negligence Suit Against Quest’s Athena Could Broadly Impact Genetic Testing Labs https://www.genomeweb.com/molecular-diagnostics/mothers-negligence-suit-against-quests-athena-could-broadly-impact-genetic Link to Annabelle’s Challenge study mentioned in the interview: https://www.annabelleschallenge.org/veds-research-vus 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 Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Deitz while supporting Staying Connected at my printify pop-up store: https://staying-connected.printify.me/products You can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

1
Carlos Horn 45:42

36 weeks temu45:42

45:42

Carlos Horn was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) last year, in 2023. With a history of multiple aneurysms and a stroke, a doctor sent him to a vascular specialist who wanted to rule out genetic causes. In this episode, Carlos talks about the events that led to his diagnosis, how his lifestyle has changed since, and his hopes for the future of research. Here is a link to some information about stem cell use in regenerative therapy from Mayo Clinic: https://www.mayoclinic.org/tests-procedures/bone-marrow-transplant/in-depth/stem-cells/art-20048117 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 Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Deitz while supporting Staying Connected at my printify pop-up store: https://staying-connected.printify.me/products You can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons: Jon Holtom Adventuresinlove4Andie Ashton Tanner Ryan Rodarmer Benjamin Weisman Scott Fiona McIver Disclaimer The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. Source…

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