Tag: Ehlers-Danlos Syndrome

Brent Tuinstra

Brent Tuinstra

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

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org

If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit 

https://calendly.com/d/z7h-2cc-g33

Links mentioned in the episode: 

VEDS Research Study: The Role of Community in Mental health: A Grief and Trauma Related Needs Assessment in the Vascular Ehlers-Danlos Syndrome Population

https://bit.ly/VEDSsurvey

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

https://marfan.org/calendar/

Join a Walk for Victory:

https://marfan.org/walk/

Support

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

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

Jon Holtom
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. 

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. 

Jacqui Fish

Jacqui Fish

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

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

Links mentioned in the episode: 

If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit https://calendly.com/d/z7h-2cc-g33

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

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

Registration:
form.jotform.com/232205213035136 

Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation programming announcement: 
https://marfan.org/2023/08/21/announcing-2023-2024-foundation-programs/

Join a Walk for Victory:
https://marfan.org/walk/

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

Support

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

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

Jon Holtom
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. 

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. 

Mikala Tingley

Mikala Tingley

In this episode of Staying Connected, we talk to Mikala Tingley, whose brother, David had Vascular Ehlers-Danlos Syndrome (VEDS). David passed away at the age of 24, and was diagnosed with VEDS after his death. Mikala is joining to share his story with VEDS. Please be advised, this episode does contain some graphic details about David’s death, which may be disturbing to some listeners. Please practice self care when listening to this episode, and reach out to your support network if you need to. 

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

If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit 

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

Support

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

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

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. 

Elissa Hanneman

Elissa Hanneman

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

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

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

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

Links mentioned in the episode

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

https://988lifeline.org

International Suicide Hotlines

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

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

Support

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

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

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie
Ashton Tanner

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. 

The DiSCOVER Trial: Part 2

The DiSCOVER Trial: Part 2

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

Learn more about the DiSCOVER Trial at discoverceliprolol.com 

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

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

Links mentioned in the episode:

DiSCOVER Trial:

discoverceliprolol.com 

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

Team VEDS- Pacific Northwest Walk for Victory

https://give.marfan.org/teamvedspnw

Support

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

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

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie
Ashton Tanner

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. 

Jared Griffin

Jared Griffin

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

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

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

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

Links mentioned in the episode:

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

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

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

Support

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

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

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie

Disclaimer 

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services.

Emily Ranta

Emily Ranta

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

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

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

 

Links and events mentioned in the episode

Emily’s first interview on Staying Connected in 2018:

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

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

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

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

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

The Marfan Foundation Symposiums: 

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

 

Support

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

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

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie

 

Disclaimer

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services.

Toni Harrison

Toni Harrison

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

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

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

Links and events mentioned in the episode

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference: 

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

The Marfan Foundation Symposiums: 

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

Support

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

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

Jon Holtom
Kacey Keegan
Adventuresinlove4Andie

Disclaimer

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services.

Clare Stacey

Clare Stacey

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

Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org

If you would like to share your story with VEDS on this podcast, visit 

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

Links mentioned in the episode:

The Rare Disease Podcast 4 Medics: Not Just Hypermobility

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

VEDS Camp, hosted by the Ehlers-Danlos Society in partnership with The VEDS Movement

https://www.ehlers-danlos.com/events/veds-family-camp/

The Marfan Foundation Conference:

https://marfan.org/conference/

The Marfan Foundation Walk for Victory:

https://marfan.org/walk

Support

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

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

Jon Holtom
Kacey Keegan

Disclaimer

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services.

Trailer: Season 5

Trailer: Season 5

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

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

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

The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.

What Medical Professionals Should Know about VEDS

What Medical Professionals Should Know about VEDS

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

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

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

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

The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.