Staying Connected

Staying Connected


Latest Episodes

Claudia Arbelaez
November 22, 2024

Claudia Arbelaez joins the show to share her story with Vascular Ehlers-Danlos syndrome (VEDS), which she was diagnosed with in 2020 after a kidney infarction and vascular rupture. A couple years afte

Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome
November 15, 2024

Bridget Porter (Metz) joins the show to share her son, Connors, story with Loeys-Dietz syndrome, which he was diagnosed with after he died of an aortic dissection at the age of 13. Connor was seen by

Debbie Vaughan, sharing Josh Doss’s story with VEDS
September 06, 2024

Today we will be hearing from Debbie Vaughan about her experience with Vascular Ehlers-Danlos syndrome (VEDS) and her late husband, Joshs, story with VEDS. Josh passed away not long after their son w

Melanie Case
August 30, 2024

Today were going to hear from Melanie Case, who was diagnosed with Marfan syndrome in 2002, a couple years after she had a thoracic aortic dissection following the delivery of her second child. This

Nancy Billon
August 23, 2024

In this episode were going to talk to Nancy Billon, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) with a combination of her medical history and a genetic test that revealed a VUS on C

Hugh Cox
August 16, 2024

In this episode were going to talk to Hugh Cox, a member of the Vascular Ehlers-Danlos Syndrome community diagnosed just in 2022. He was first misdiagnosed with a clotting disorder.

Maggie Buckley
August 09, 2024

In this episode were going to talk to Maggie Buckley, a long-time member of the community who was diagnosed with hypermobile EDS when she was a child. Recently, a genetic test revealed she has the ge

Erin Langley
August 02, 2024

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 epis

Carlos Horn
July 26, 2024

Carlos Horn was diagnosed with VEDS (Vascular Ehlers-Danlos Syndrome) last year, in 2023. With a history of multiple aneurysms and a stroke, a doctor sent him to a vascular specialist who wanted to ru

Special: Emotional Recovery
May 21, 2024

After my recent renal dissection, kidney infarction, and iliac dissection with Vascular Ehlers-Danlos Syndrome (VEDS), I wanted to know what emotional recovery was like for others after medical events