Staying Connected

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, let me know here. I look forward to hearing from you!

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

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

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

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

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

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

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

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.

Source

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

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

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

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

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

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.

Source

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

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

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

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

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

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

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.

Source

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

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

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

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

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

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.

Source

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

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

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

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

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

Big thank you to my top tier patrons!

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

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

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

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

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

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

Source