Staying Connected Katie Wright
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- Samhälle och kultur
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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Catching up with Tyler Farley
Tyler Farley was originally on Staying Connected in 2022 to share his story with VEDS or Vascular Ehlers-Danlos Syndrome. He returns in this episode to share his recent experience with a bowel perforation in the fall of 2023, and how he is moving forward, as well as his experience meeting other people in person with … Read More Read More
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Kevin Kroeker
Kevin Kroeker shares his story with Loeys-Dietz syndrome, which he was diagnosed with in his 50s after a spontaneous coronary artery dissection (SCAD). His Loeys-Dietz diagnosis explained a prior event with his carotid artery, and uncovered a larger family history of Loeys-Dietz. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, … Read More Read More
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Roe Nania
Roe Nania shares her family’s story with Vascular Ehlers-Danlos syndrome (VEDS). Roe’s brother, Angelo, was the first person diagnosed in the family, and died from an aortic dissection in 2019. After his death, more members of the family got tested and diagnosed, and it’s assumed that her father also died from VEDS. Find more information, … Read More Read More
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Betsy Matarrita
Betsy Matarrita was born and raised in Costa Rica, and was diagnosed with Marfan syndrome when she was a young child. Growing up, she didn’t know anyone else with Marfan syndrome, and they had to come to the US to get medical care for scoliosis as a child, when her and her family did not … Read More Read More
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Deb Kruk
Deb Kruk was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in her mid-60s, following the loss of her 40 year old son, Brian, to an aortic dissection. They did not know Brian had VEDS when he died. In this episode, she shares that experience, processing her own diagnosis, things she loved about Brian, and more. Find … Read More Read More
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Sheila Felske
Today we’re going to hear from Sheila Felske, who is joining us to share her experience with Vascular Ehlers-Danos Syndrome (VEDS), which she was diagnosed with last year. Sheila had her first carotid artery dissection soon after her first daughter was born, and then had an achilles tendon rupture after her second daughter was born. … Read More Read More