Staying Connected

Staying Connected

Sharing our stories with vascular and aortic connective tissue conditions

Episodes

Bridgette

April 29, 2018 • 33 mins
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 cav...
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Deborah and Soren

May 27, 2018 • 28 mins
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
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Shannon

June 24, 2018 • 53 mins
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
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Annie

July 29, 2018 • 31 mins
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
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Aaron

August 26, 2018 • 27 mins
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
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Carla

September 30, 2018 • 25 mins
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
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Brook

October 28, 2018 • 45 mins
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!  
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Chrystal

November 25, 2018 • 27 mins
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
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Emily

December 30, 2018 • 44 mins
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
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My Story

January 27, 2019 • 62 mins
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
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Ed

February 24, 2019 • 38 mins
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
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Sarah and Andrew

March 31, 2019 • 35 mins
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
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Lynley

April 28, 2019 • 25 mins
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
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Bella

May 17, 2019 • 33 mins
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
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Kristi

May 26, 2019 • 41 mins
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
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Chris

June 30, 2019 • 33 mins
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
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Dr. Peter Byers

July 16, 2019 • 47 mins
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
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Jennifer and Cade

July 28, 2019 • 30 mins
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
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Dr. Sherene Shalhub

July 30, 2019 • 21 mins
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
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Jeremias, Miles and Henry

August 25, 2019 • 27 mins
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
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