Staying Connected

In this episode I talk to Annie, who was diagnosed clinically with vEDS at 8 years old and officially diagnosed at 14. Annie is the first person I have met in person with vEDS and she is amazing! It is such a gift to be able to get to know her

Today I talk to Shannon, who was diagnosed with both the vascular and classical types of Ehlers Danlos Syndrome. She is just shy of 32 years old and has lived through 32 surgeries related to complications from EDS! If you have vEDS, or have or lost a family member with vEDS, and want to be … Continue reading Shannon

In this episode I talk to Deborah, whose 9 year old son was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) at the age of five. We hear about the road to diagnosis, changes they’ve made to his daily life, and coping strategies. To learn more about Deborah’s books and to get one, visit http://www.amazon.com/author/daroach If you’d … Continue reading Deborah and Soren

Welcome to the first episode of Staying Connected! I started Staying Connected as way to connect with other people diagnosed or impacted by vascular Ehlers Danlos Syndrome (vEDS). In today's episode, I talk to Bridgette, who was diagnosed in her early twenties following an angiogram that went terribly wrong. She needed twelve surgeries to save her life from the angiogram, which was intended to get a better look at her carotid cavernous fistula.