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!
Erin Langley was tested for VEDS (Vascular Ehlers-Danlos Syndrome) due to some concerning family history, but her results came back as a Variant of Unknown/Uncertain Significance, or VUS. In this episode, she shares her experience with those results and how she’s found support in the meantime. Link to the articles mentioned in the interview: The … 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!
