The Translucent One: Recent Episodes
Katie Wright
My brother, Jacob Frederick, rejoins the show. Our last interview was only a couple weeks before my recent renal artery dissection/kidney infarction and iliac dissection. In this episode, we talk about both of our experiences with those medical events in November and the aftermath.
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.
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Today we’re going to hear from Sheila Felske, who is joining us to share her experience with Vascular Ehlers-Danos Syndrome (VEDS), which she was diagnosed with last year. Sheila had her first carotid artery dissection soon after her first daughter was born, and then had an achilles tendon rupture after her second daughter was born. Then in 2022, she had a vertebral artery dissection and her carotid dissection re-dissected, and she was referred to a geneticist.
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.
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Deb Kruk was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in her mid-60s, following the loss of her 40 year old son, Brian, to an aortic dissection. They did not know Brian had VEDS when he died. In this episode, she shares that experience, processing her own diagnosis, things she loved about Brian, 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
Jon Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
Disclaimer
The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.
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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.
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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.
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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.
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Tyler Farley was originally on Staying Connected in 2022 to share his story with VEDS or Vascular Ehlers-Danlos Syndrome. He returns in this episode to share his recent experience with a bowel perforation in the fall of 2023, and how he is moving forward, as well as his experience meeting other people in person with VEDS, Marfan, and Loeys-Dietz at The Marfan Foundation Conference in 2023.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org.
If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit
https://calendly.com/d/z7h-2cc-g33
Links mentioned in the episode:
Tyler’s Walk page: https://give.marfan.org/team/561418
Tyler’s Story with Duke: https://www.dukehealth.org/blog/why-one-man-chose-duke-lifesaving-abdominal-surgery?fbclid=IwAR0m3B7Lxua6Aoxd8CAkTmwAPLn7BWR71m8oyl2qH7n-TvQ27oVBow4bhz8
Links to resources, events, and research opportunities:
VEDS Collaborative Research Study: Email vedscoll@ohsu.edu
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
https://marfan.org/calendar/
Join a Walk for Victory:
https://marfan.org/walk/
Help and Resource Center
https://marfan.org/ask
https://loeysdietz.org/ask
https://thevedsmovement.org/ask
Support
You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone
Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
Disclaimer
The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.
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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.
Share Tweet Share Source
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.
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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.
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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.
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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.
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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.
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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.
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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.
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I (Katie) am currently the hospital with a renal artery dissection and kidney infarction. This show will take a pause, and the season will be resumed when I am feeling up to it. Thanks for all your support!
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Brent Tuinstra was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in his thirties after a bowel perforation. In this episode, Brent talks about the experience with the bowel perforation, the misdiagnosis of Crohn’s that came before his VEDS diagnosis, what it felt like getting diagnosed with VEDS, and how he’s gotten involved since.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org.
If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit
https://calendly.com/d/z7h-2cc-g33
Links mentioned in the episode:
VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population
https://bit.ly/VEDSsurvey
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
https://marfan.org/calendar/
Join a Walk for Victory:
https://marfan.org/walk/
Support
You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone
Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman
Disclaimer
The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.
Disclaimer
The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.
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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.
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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.
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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.
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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. … Read More Read More
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
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.
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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, … Read More Read More
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 … Read More Read More
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 … Read More Read More
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 … Read More Read More
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 … Read More Read More
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 … Read More Read More
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.
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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.
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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.
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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.
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Today we hear from a previous guest, Emily Ranta, who was on the show in 2018. In this episode, she’ll share her experience with a bowel perforation and how her life with VEDS has been since her last interview.
Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org.
If you would like to share your story with VEDS on this podcast, visit
https://staying-connected.blubrry.net/contact/
Links and events mentioned in the episode
Emily’s first interview on Staying Connected in 2018:
https://staying-connected.blubrry.net/2018/12/30/emily/
REDS4VEDS Day, hosted by Annabelle’s Challenge
https://www.reds4veds.org
Real Talk: VEDS, with Katie and Bella, the in_VEDS_tigator
https://www.youtube.com/live/Qp9wn3HoDgg?feature=share
VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement
https://www.ehlers-danlos.com/events/veds-family-camp/
The Marfan Foundation Conference:
https://marfan.org/conference/
The Marfan Foundation Walk for Victory:
https://marfan.org/walk
The Marfan Foundation Symposiums:
https://marfan.org/resources/educational-opportunities/
Support
You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone
Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:
Jon Holtom
Kacey Keegan
Adventuresinlove4Andie
Disclaimer
The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services.
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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.
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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.
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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.
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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.
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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, visit https://translucentone.blog/contact. 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.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.
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, visit https://translucentone.blog/contact. 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.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.
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. … Continue reading Tyler Farley
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 … Continue reading Samantha Arche
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. … Continue reading Cristy Gann
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 … Continue reading Follow-up with Jeremias Tays
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 … Continue reading Sarah Fulop
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 … Continue reading Trailer: Season 4
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 … Continue reading Dr. Shaine Morris
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. … Continue reading Charlene Terrell-Newman and Luke
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. … Continue reading Dominick Corso
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 … Continue reading Grace Ehrbar
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 … Continue reading Otto Nitschmann
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 … Continue reading Heidi Green
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 … Continue reading Christopher Underwood
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 … Continue reading Karen DeCoursey
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 … Continue reading Jonathan Kile
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 … Continue reading Lise Voje-Johanson
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, … Continue reading Dr. Melissa Russo
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 … Continue reading Ashley Rose Marisch
Lyndell Fraser was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2008 following a carotid artery dissection and major stroke. His mother passed away prior to his diagnosis due to complications from the September 11 world trade center attacks, but both Lyndell and his mom showed signs of VEDS prior to his dissection and stroke. … Continue reading Lyndell Fraser
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 … Continue reading Mike DeCoursey
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 … Continue reading Cathy Bowen (Dave’s Mom)
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 … Continue reading Erik
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 … Continue reading Rebecca
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 … Continue reading Dawn S.
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 … Continue reading Matthew
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 … Continue reading Melinda and Nataleigh
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 … Continue reading Morgan and Cameron
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 … Continue reading Patrick
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 … Continue reading Danjela
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 … Continue reading Erica
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 … Continue reading Daniel
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 … Continue reading Emma
Destiny was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) after an intestinal perforation that occurred when she was just four years old, while getting a “bear hug.” Her mom also had VEDS, and passed away a few months after Destiny’s diagnosis. Destiny’s father became her rock and advocate, and also taught her how to advocate for … Continue reading Destiny
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, … Continue reading Karly and Chase
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 … Continue reading Lucy
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 … Continue reading Mariah
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 … Continue reading Megan
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, … Continue reading Patrick and Jessica (Coggins) Westmoreland
As some of you might know, in October 2019 I started working for The Marfan Foundation full-time as the Director of The VEDS Movement. I have been thinking a lot about the last three years since diagnosis- where I was then, and where I am now. What an amazing journey it has been. When I … Continue reading The Movement
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 … Continue reading Jenny
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 … Continue reading Meg, Zoe, and Izaak
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 … Continue reading Bradley
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 … Continue reading Joy (Katie’s mom)
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 … Continue reading Heather
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 … Continue reading Abby and Jon
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. … Continue reading Jeremias, Miles and Henry
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 … Continue reading Dr. Sherene Shalhub
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 … Continue reading Jennifer and Cade
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 … Continue reading Dr. Peter Byers
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 … Continue reading Chris
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! If you have vEDS and want … Continue reading Kristi
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 … Continue reading Bella
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 … Continue reading Lynley
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 If you want to talk … Continue reading Sarah and Andrew
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! Episodes are released on the last Sunday of every month. … Continue reading Ed
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 links to my youtube and website below: youtube.com/translucentone translucentone.blog Don’t forget to subscribe to this podcast to hear more patient stories with Vascular Ehlers Danlos Syndrome! If … Continue reading My Story
I have Vascular Ehlers Danlos Syndrome. It is something I have said many times since my diagnosis almost two years ago. I have Vascular Ehlers Danlos Syndrome. Whether I am telling a new friend, a doctor, or an emergency responder, the responses I get are typical. “How do you spell that?” “What is that?” “Got … Continue reading Reflection
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 have vEDS, or have or lost a family member … Continue reading Emily
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 have vEDS, or have or lost a family member with vEDS, and … Continue reading Chrystal
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 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 have vEDS, or have or lost a family member with vEDS, and want … Continue reading Carla
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 … Continue reading Aaron
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 have vEDS, … Continue reading Annie
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 have vEDS, or have or lost a family member with vEDS, and want to be … Continue reading Shannon
In this episode I talk to Deborah, whose 9 year old son was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) at the age of five. We hear about the road to diagnosis, changes they’ve made to his daily life, and coping strategies. To learn more about Deborah’s books and to get one, visit http://www.amazon.com/author/daroach If you’d … Continue reading Deborah and Soren
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.