Staying Connected

Emily was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) after a misdiagnosis of Classical EDS and the passing of her mother, who also had vEDS and was not properly diagnosed. Emily still finds joy in music, and continues to play for her mom. <3

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

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Chrystal was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) along with her mother and brother. She has survived a pregnancy and is the last surviving member of her family who has vEDS. She was an inspiring person to talk to! <3

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

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Brook had years of complications that pointed towards vEDS, or Vascular Ehlers Danlos Syndrome, but it wasn’t until his 40s that he was finally diagnosed. He has been through so much and his story is inspirational!

Stay tuned for more episodes on the last Sunday of every month!

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Carla and her daughter Effie were diagnosed with vEDS after Effie was put into foster care for suspected abuse. It wasn’t until Effie and Carla got diagnosed with vEDS that Carla and her husband were able to get her back.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

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Aaron is 33 and was diagnosed a year and a half ago with vascular Ehlers Danlos Syndrome (vEDS). He tells us his story of diagnosis and events that he has experienced so far. He also tells us about his father’s story with vEDS, which was undiagnosed when he passed away two years ago.

This interview was done in person over the weekend that the vEDS collaborative met in Seattle.

To make a donation to the vEDS Collaborative, https://app.mobilecause.com/vf/vEDS

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

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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

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

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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 would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

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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

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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.

If you would like to share your story with VEDS on this podcast, reach out to me here. I look forward to hearing from you!

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