Staying Connected
Sharing our stories with vascular and aortic connective tissue conditions
Episodes
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 caver...
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
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!
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, http...
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!
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!
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!
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!
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
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!
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 M...
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. T...
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 ...
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 wi...
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 Founda...
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 infor...
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 th...
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 16 years old and recently got to meet others his age at the Marfan Annual Conference earlier this ...
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 experience with vEDS, including her work to further research and human connection through the vE...
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.
Jeremias is 33 now and has been fortunate to have few life-threatening complications so far. He has had a lot of lung issues, and a partial ...
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