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!
In this episode, we talk to Marisa Hart, who was diagnosed with Marfan syndrome as a child. Marisa has an extensive family history and shares how Marfan has impacted her life, from sports, to seeing family members deal with Marfan, and her daily life and own surgery for pectus excavatum. Content warning: Brief discussion of … 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!
