Category: connective tissue

Katy Decoursey
Katy DeCoursey

Katy DeCoursey

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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:
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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Kelly Gann
Kelly Gann

Kelly Gann

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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:
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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Samantha Arche
Samantha Arche

Samantha Arche

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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:
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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Joy
Joy (Katie’s mom)

Joy (Katie’s mom)

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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 growing up, while the second half focuses on how we coped with the diagnosis as a mother and daughter.

Find more information about VEDS, including support groups 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, reach out to me here. I look forward to hearing from you!

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Chris
Chris

Chris

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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 a ostomy bag resulting from a bowel perforation in 2014.

You can follow Chris on Twitter: @Van_Tater

Find more information about VEDS, including support groups 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, reach out to me here. I look forward to hearing from you!

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Kristi
Kristi

Kristi

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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!

Find more information about VEDS, including support groups 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, reach out to me here. I look forward to hearing from you!

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Bella
Bella

Bella

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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 complications from vEDS.

Today we are wearing red to raise awareness for vEDS. Wear red, take a picture, and share with the hashtag #REDS4VEDS!

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Lynley
Lynley

Lynley

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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 her outlook has changed since diagnosis.

Find more information about VEDS, including support groups 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, reach out to me here. I look forward to hearing from you!

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Sarahandandrew
Sarah and Andrew

Sarah and Andrew

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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

Find more information about VEDS, including support groups 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, reach out to me here. I look forward to hearing from you!

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Ed
Ed

Ed

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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!

Find more information about VEDS, including support groups 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, reach out to me here. I look forward to hearing from you!

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Chrystal
Chrystal

Chrystal

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

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Carla
Carla

Carla

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

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Aaron
Aaron

Aaron

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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 was done in person over the weekend that the vEDS collaborative met in Seattle.

To make a donation to the vEDS Collaborative, https://app.mobilecause.com/vf/vEDS

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

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Annie
Annie

Annie

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

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Shannon
Shannon

Shannon

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

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Deborah
Deborah and Soren

Deborah and Soren

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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

 

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Bridgette
Bridgette

Bridgette

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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.

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

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Privacy Policy

Disclaimer

The views, information or opinions in the blog, podcasts 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. This content is not produced by nor affiliated with The Marfan Foundation or The VEDS Movement.

About Staying Connected

Staying Connected is a podcast featuring the stories of people affected by Vascular Ehlers-Danlos Syndrome (VEDS). It is produced by Translucent One LLC.