Staying Connected

Bradley was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) a day before his 47th birthday, and a few years after his younger brother passed from an aortic aneurysm. Just a month after his diagnosis with VEDS, he himself suffered an aortic dissection and survived, despite the odds! Bradley has been through so much since diagnosis, and … Continue reading Bradley

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 … Continue reading Joy (Katie’s mom)

Heather was diagnosed with vEDS after several back-to-back medical events in 2015, including a kidney infarction and a carotid cavernous fistula. She had also previously had a colon rupture and an early delivery of her son. Luckily, an ER doc from Paris noticed the signs of vEDS during an emergency room visit. She had complications … Continue reading Heather

Abby’s son, Jon, was diagnosed several years ago with vEDS at the age of 2. He had been to 7 different doctors by the time Abby pushed for a genetic consult, and even then, the first geneticist said there was nothing wrong. Jon would get bruises just from a diaper change, and had a lot … Continue reading Abby and Jon

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

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

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

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

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

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

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

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

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

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

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

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

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

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!  

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

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