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 and related vascular and aortic connective tissue conditions, like Marfan and Loeys-Dietz, getting a chance to hear and share their stories!
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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 and related vascular and aortic connective tissue conditions, like Marfan and Loeys-Dietz, getting a chance to hear and share their stories!
Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome
Staying Connected
1 hour 6 minutes 33 seconds
12 months ago
Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome
Bridget Porter (Metz) joins the show to share her son, Connor’s, story with Loeys-Dietz syndrome, which he was diagnosed with after he died of an aortic dissection at the age of 13. Connor was seen by a geneticist a few years before he died, but was told there was no need for a genetic test. … Read More Read More
Staying Connected
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 and related vascular and aortic connective tissue conditions, like Marfan and Loeys-Dietz, getting a chance to hear and share their stories!