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 with VEDS in 2017, and meeting others with VEDS has changed how I handle my own diagnosis. In this podcast I connect with other people whose lives have been impacted by VEDS, getting a chance to hear and share their stories!
Katy’s husband, Mike, and her son were diagnosed with VEDS in 2020. In this episode, Katy shares her perspective as a spouse and a mom of loved ones with this condition. These episode show notes will be updated with a link to the kids book, “Wonderfully Made,” once it is available on Kindle. Find more … Continue reading Katy DeCoursey
In today’s episode, we’re going to talk to Kelly Gann, who was diagnosed with VEDS in 2009, when she was in Physician Assistant (PA) school. Kelly shares how she coped with that diagnosis, how her life has changed since then, and how her experience has changed now that her sister, Cristy, has also been diagnosed. … Continue reading Kelly Gann
In today’s episode, we’re going to talk to Tyler Farley, who was diagnosed with VEDS following a bowel perforation when he was 17. The VEDS diagnosis explained many things for Tyler, including the early death of his father, but also was a really challenging diagnosis to get when he was about to go into college. … Continue reading Tyler Farley
In today’s episode, we’re going to talk to Samantha Arche, who was diagnosed with VEDS following a uterine rupture during the delivery of her second child. Samantha was concerned that she might have VEDS prior to this, but struggled to get genetic testing. In the episode I mentioned the prior interview with Meg Boeglin, which … Continue reading Samantha Arche
Cristy Gann was diagnosed with VEDS after her son Hunter died of an aortic dissection last year, in September of 2021. Hunter was only 14 years old. In this interview, Cristy shares what happened to Hunter, signs of VEDS that were missed in both her and Hunter, and how she is handling her own diagnosis. … Continue reading Cristy Gann
Follow-up with Jeremias Tays
In today’s episode, we’re going to touch base with Jeremias Tays, who was on the podcast back in 2019. He’s going to share his experience and insights over the last three years, as well as his experience with a bowel perforation that occurred in November 2021. The original interview with Jeremias in 2019 can be … Continue reading Follow-up with Jeremias Tays
Incredible gift to anyone connected to vEDS
The best and most informative podcast on vEDS. Incredible for anyone with the condition or related to someone who has it. Katie and her podcast are a gift to anyone dealing with vascular ehlers danlos syndrome.
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.