I started Staying Connected as a way to connect with other people diagnosed with or impacted by Vascular Ehlers Danlos Syndrome, or vEDS. I myself was diagnosed in 2017, and meeting people with this syndrome is a struggle as we are few and far between! In this podcast I connect with other people whose lives have been impacted by vEDS, getting a chance to hear and share their stories!
Cathy Bowen (Dave’s Mom)
Cathy Bowen tells us about her son, David Daniel Bowen III, and the colostomy reversal that ultimately took his life in 1996 at the age of 14, due to medical mismanagement and the hospital’s lack of knowledge about Vascular Ehlers-Danlos Syndrome (VEDS). Dave’s death left Cathy an empty shell, and she dealt with his loss … Continue reading Cathy Bowen (Dave’s Mom)
Erik was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) four years ago at the age of 43, after a spontaneous renal artery dissection that occurred while he was at work. He talks about how he got to his diagnosis, ways his life has changed since, and how he stays positive. Erik’s family runs an annual chili … Continue reading Erik
Rebecca was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) in 2016, when she moved to Boston and met doctors who immediately put her medical history together- a history of a renal artery dissection, and two coronary artery dissections, one of which caused cardiac arrest, in an otherwise healthy young woman. In this episode, Rebecca shares her … Continue reading Rebecca
Dawn was diagnosed with VEDS in 2009, and is now 62 years old. Even though her mom passed away at 38 from an aortic rupture when Dawn was just 8 years old, it wasn’t until after a spontaneous rectal hematoma when she was 51 that her team was able to put the pieces together. In … Continue reading Dawn S.
Matthew was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in 2020, when after years of struggling to get answers, he came across characteristics of VEDS, including sleeping with his eyes open, on The VEDS Movement website in early 2020. Knowing he had so many of the characteristics, and previously had been dismissed by a geneticist, he … Continue reading Matthew
Melinda and Nataleigh
Melinda’s 11 year-old daughter, Nataleigh, was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, after 8 1/2 years of medical issues that finally led to a genetics appointment. At first, she was diagnosed with hypermobile EDS, but Melinda pushed for a genetic test to rule out VEDS and she unexpectedly came back positive. Melinda shares what … Continue reading Melinda and Nataleigh
Great content and super inspiring
Love Katie’s passion behind this podcast and love how she is giving people with veds a platform to tell and share their story!
A vital resource for those with a rare condition
This podcast provides a fascinating and informative window into a rare condition and its many serious issues. For those going through the often long diagnostic odyssey, it’s probably the best resource available online. It is frank and unflinching, but also deeply hopeful. It should be required listening for doctors who treat VEDS patients.
Definitely worth subscribing to.