95 episodes

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!

Staying Connected Katie Wright

    • Society & Culture
    • 4.7 • 27 Ratings

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!

    Liam Nelson

    Liam Nelson

    Liam Nelson was diagnosed with Marfan syndrome when he was 11 years old. In this interview, we talk about how he handled his diagnosis, his career in film and comedy, his involvement in the Marfan community, and more. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and … Read More Read More

    • 47 min
    Lauren Atherton

    Lauren Atherton

    Lauren Atherton was diagnosed with Loeys-Dietz syndrome after an aortic dissection when she was 28 years old. In this interview, we talk about that dissection, how she’s dealt with her diagnosis, and more.  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org.  If you would like … Read More Read More

    • 45 min
    Michelle Lucena

    Michelle Lucena

    Michelle Lucena was diagnosed with VEDS, or Vascular Ehlers-Danlos syndrome, after two carotid artery dissections. In this interview, we talk about how these dissections affected her military career, how she’s handled her diagnosis, and how she’s held onto her passion of physical fitness. Find more information, including support groups and webinars, about VEDS, Marfan, and … Read More Read More

    • 43 min
    Taborski McClellen

    Taborski McClellen

    Taborski McClellen was diagnosed with Marfan syndrome between 12-13 years old. In the time since his diagnosis, he’s had two retinal detachments, a lung collapse, and an aortic dissection. In this interview, he talks about his story with Marfan, and his book, Living with Marfan syndrome in the Hands of GOD.  Find more information, including … Read More Read More

    Jacob Frederick (Katie’s brother)

    Jacob Frederick (Katie’s brother)

    I was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS), in 2017. In this episode, I’m joined by my brother, Jacob Frederick, to talk about his experience with my diagnosis and hospitalizations.  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org.  If you would like to share your … Read More Read More

    • 1 hr 9 min
    Allison Pullins

    Allison Pullins

    Allison’s son, James, was diagnosed with Marfan when he was 3 years old, following a lens dislocation. James is now 8 years old, and in this episode, Allison talks about his diagnosis story, how they handle communicating Marfan with James, research, navigating the US healthcare care system, and more.  Find more information, including support groups … Read More Read More

    • 45 min

Customer Reviews

4.7 out of 5
27 Ratings

27 Ratings

ConferenceApp ,

Incredible gift to anyone connected to vEDS

The best and most informative podcast on vEDS. Incredible for anyone with the condition or related to someone who has it. Katie and her podcast are a gift to anyone dealing with vascular ehlers danlos syndrome.

SlimDeCo ,

Great content and super inspiring

Love Katie’s passion behind this podcast and love how she is giving people with veds a platform to tell and share their story!

WyattStanley ,

A vital resource for those with a rare condition

This podcast provides a fascinating and informative window into a rare condition and its many serious issues. For those going through the often long diagnostic odyssey, it’s probably the best resource available online. It is frank and unflinching, but also deeply hopeful. It should be required listening for doctors who treat VEDS patients.

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