PODCAST

Staying Connected

Katie Wright

with Vascular and Aortic Connective Tissue Conditions

society & culture personal journals

All Episodes

37:49

Jared Griffin

Staying Connected ·

2023/05/06

Jared Griffin, CEO and Founder of Annabelle’s Challenge, shares his experience with getting his daughter’s diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS), and experience starting Annabelle’s Challenge, a UK Charity for VEDS, more than 10 years ago. Learn more about VEDS and Annabelle’s Challenge at https://www.annabelleschallenge.org/ Find more information about VEDS, including support groups and medical … Read More Read More

en-US

38:15

Emily Ranta

Staying Connected ·

2023/04/22

Today we hear from a previous guest, Emily Ranta, who was on the show in 2018. In this episode, she’ll share her experience with a bowel perforation and how her life with VEDS has been since her last interview. Find more information about VEDS, including support groups and medical webinars, at https://TheVEDSMovement.org. If you would … Read More Read More

en-US

44:03

Toni Harrison

Staying Connected ·

2023/04/08

Today we are gong to hear from Toni Harrison, who was initially diagnosed with hypermobile EDS. After an event, she received genetic testing that showed she actually has VEDS. In this episode, she is going to share her experience and how her VEDS diagnosis impacts her life. Find more information about VEDS, including support groups … Read More Read More

en-US

35:32

Clare Stacey

Staying Connected ·

2023/03/25

Today we are gong to hear from a member of our community in the UK, Clare Stacey, who was diagnosed with VEDS following her mother’s death when Clare was 14 years old. In the episode, she is going to share how her understanding of and interaction with her VEDS diagnosis has changed as she has … Read More Read More

en-US

7:11

Trailer: Season 5

Staying Connected ·

2023/03/18

Clips from the upcoming season of Staying Connected, available on March 25 wherever you listen to podcasts. You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone Thank you all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:Jon HoltomKacey Keegan The views, information or opinions in the blog, … Read More Read More

en-US

21:11

What Medical Professionals Should Know about VEDS

Staying Connected ·

2023/02/11

Over the last few seasons of Staying Connected, I’ve asked some of our community members living with or caring for loved ones with Vascular Ehlers-Danlos Syndrome (VEDS) what they think medical professionals should know about VEDS. This special episode is a compilation of some of those responses. There are several organizations providing information and support … Read More Read More

en-US

31:38

Katy DeCoursey

Staying Connected ·

2022/12/10

Katy’s husband, Mike, and her son were diagnosed with VEDS in 2020. In this episode, Katy shares her perspective as a spouse and a mom of loved ones with this condition. These episode show notes will be updated with a link to the kids book, “Wonderfully Made,” once it is available on Kindle. Find more … Read More Read More

en-US

30:49

Kelly Gann

Staying Connected ·

2022/11/26

In today’s episode, we’re going to talk to Kelly Gann, who was diagnosed with VEDS in 2009, when she was in Physician Assistant (PA) school. Kelly shares how she coped with that diagnosis, how her life has changed since then, and how her experience has changed now that her sister, Cristy, has also been diagnosed. … Read More Read More

en-US

40:07

Tyler Farley

Staying Connected ·

2022/11/12

In today’s episode, we’re going to talk to Tyler Farley, who was diagnosed with VEDS following a bowel perforation when he was 17. The VEDS diagnosis explained many things for Tyler, including the early death of his father, but also was a really challenging diagnosis to get when he was about to go into college. … Read More Read More

en-US

38:06

Samantha Arche

Staying Connected ·

2022/10/29

In today’s episode, we’re going to talk to Samantha Arche, who was diagnosed with VEDS following a uterine rupture during the delivery of her second child. Samantha was concerned that she might have VEDS prior to this, but struggled to get genetic testing. In the episode I mentioned the prior interview with Meg Boeglin, which … Read More Read More

en-US

26:52

Cristy Gann

Staying Connected ·

2022/10/15

Cristy Gann was diagnosed with VEDS after her son Hunter died of an aortic dissection last year, in September of 2021. Hunter was only 14 years old. In this interview, Cristy shares what happened to Hunter, signs of VEDS that were missed in both her and Hunter, and how she is handling her own diagnosis. … Read More Read More

en-US

35:18

Follow-up with Jeremias Tays

Staying Connected ·

2022/10/01

In today’s episode, we’re going to touch base with Jeremias Tays, who was on the podcast back in 2019. He’s going to share his experience and insights over the last three years, as well as his experience with a bowel perforation that occurred in November 2021. The original interview with Jeremias in 2019 can be … Read More Read More

en-US

42:42

Sarah Fulop

Staying Connected ·

2022/09/17

Sarah Fulop was diagnosed with VEDS, or vascular Ehlers-Danlos Syndrome, after her sister died from complications following a pregnancy. Her brother also died of an aortic dissection at age 15, when she was about 3 years old. While her family is in some ways the textbook case of VEDS, they inherited the condition through a … Read More Read More

en-US

5:06

Trailer: Season 4

Staying Connected ·

2022/09/10

This season we are going to talk to 7 members of our community about their stories and experiences with VEDS. We’ll hear from several people who have a VEDS diagnosis themselves, including a mom who lost her son to VEDS last year, as well as a spouse and mom of people with VEDS. We also … Read More Read More

en-US

20:46

Dr. Shaine Morris

Staying Connected ·

2022/06/11

Dr. Shaine Morris, pediatric cardiologist and researcher at Texas Children’s Hospital, and advocate for our VEDS community, shares how she got involved with the VEDS community and talks about her current research, the CLARITY registry. To enroll or get more information about the CLARITY study mentioned in this podcast, email Shaine’s research coordinator, Nadia, at … Read More Read More

en-US

36:54

Charlene Terrell-Newman and Luke

Staying Connected ·

2022/05/28

Charlene’s son, Luke, was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 4, after persistent issues with bruising and bleeding led to a hematologist and a diagnosis of Von Willebrand’s at 2 years old, and then later, a rheumatologist who sent him to a genetic counselor who recognized VEDS at 4 years old. … Read More Read More

en-US

48:14

Dominick Corso

Staying Connected ·

2022/05/14

Dominick Corso was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 44, after a sudden medical emergency that identified three aneurysms: two iliac artery aneurysms and an abdominal aortic aneurysm. This event led to his doctors suspecting a connective tissue condition and sending him to a geneticist who ultimately diagnosed him with VEDS. … Read More Read More

en-US

35:01

Grace Ehrbar

Staying Connected ·

2022/04/30

Grace Ehrbar was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, at 12 years old after a spontaneous bowel perforation. She is the only person in her family with VEDS. In this episode, Grace shares her experience with the bowel perforation when she was 12, as well as how her knowledge and attitude towards VEDS has … Read More Read More

en-US

38:38

Otto Nitschmann

Staying Connected ·

2022/04/16

Otto Nitschmann was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) at the age of 30, after he experienced a sudden splenic artery rupture. This event, combined with his hypermobile joints and his dad’s early death from a brain aneurysm, led his rheumatologist to consider VEDS and order a genetic test. You can reach out to Otto … Read More Read More

en-US

39:50

Heidi Green

Staying Connected ·

2022/04/02

Heidi Green’s daughter, Isabella, was diagnosed with VEDS, or Vascular Ehlers-Danlos Syndrome, in 2021 when she was 8 years old. For years Heidi asked her pediatrician about problems Isabella had, but was told these things were likely due to her being born premature. When she pushed for genetic testing in 2021, she finally got the … Read More Read More

en-US

118 results

Staying Connected

All Episodes

Similar Podcasts

Voices of Life

APG Mannheim

Promo Estereo Podcast

Promo Estereo

Talking Timelines Podcast

Talkingtimelines

גיקונומי

ראם שרמן ודורון ניר

Drømmefanger

Drømmefanger