Staying Connected – Staying Connected

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 recorded live on 7/13/19 in Houston at the Marfan Foundation Annual Conference. You can even hear the air conditioning at the hotel wake up part way through the episode!

If you want to learn more about the vEDS Collaborative and enroll in the research study, visit vEDSCollaborative.org.

If you want to be a part of this podcast, or have genetically confirmed vEDS and have not been integrated into our group, reach out at [email protected].

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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 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 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 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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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 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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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 a link to my youtube

youtube.com/translucentone

Don’t forget to subscribe to this podcast to hear more patient stories with Vascular Ehlers Danlos Syndrome!

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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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 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 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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