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Artwork for Staying Connected

Staying Connected

Katie Wright
Vascular Ehlers-Danlos Syndrome
Loeys-Dietz Syndrome
Aortic Dissection
Connective Tissue Disorders
Marfan Syndrome
Genetic Testing
Community Support
Mental Health
Louis-Dietz Syndrome
Vascular Connective Tissue Conditions
Bowel Perforation
Patient Advocacy
Chronic Illness Advocacy
Family Health
Ehlers-Danlos Syndrome
Colon Rupture
Kidney Infarction
Aneurysms
Open-Heart Surgery
Aortic Surgery

Sharing our stories with vascular and aortic connective tissue conditions

PublishesWeeklyEpisodes118Founded7 years ago
Categories
Personal JournalsHealth & FitnessMedicineSociety & Culture

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Artwork for Staying Connected

Latest Episodes

It’s been a minute, and I am excited to get back to the show. If you’re interested in sharing your story on the next season, please let me know by filling out this form. calendly.com/d/z7h-2cc-g33

Look forward to talking with you soon!

... more

YouTube

Today, we’re going to talk to Carlos Morales, who lost one of his children, Kaitlyn, to an aortic dissection in 2023 at the age of 14. This aortic dissection led to their diagnosis of Loeys-Dietz syndrome type 2, and also revealed that Carlos has Loe... more

YouTube

Today, we’re going to talk to Carmen David, who is going to share her experience with an aortic dissection after the delivery of her second daughter, her experiences recovering from that physically and emotionally, how she handled the information of ... more

YouTube

Today, we’re going to talk to Bella Marin, who was previously on the show to talk about her story with VEDS, or Vascular Ehlers-Danlos syndrome. In today’s episode, she is returning to the show to talk about her recent experience with a bowel perfora... more

YouTube

Key Facts

Accepts Guests
Contact Information
Podcast Host

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Recent Guests

Bella Marin
A patient with Vascular Ehlers-Danlos Syndrome sharing her medical experiences.
Episode: Reconnecting with Bella Marin aka in_VEDS_tigator
Marisa Hart
Diagnosed with Marfan syndrome as a child, shares personal experiences and family history.
Episode: Marisa Hart
Tammy Asplund
A 57-year-old woman from South Carolina diagnosed with Loeys-Dietz type 1.
Episode: Tammy Asplund
Ryan Rodarmer
Director of The VEDS Movement and aortic dissection survivor.
The VEDS Movement
Episode: Ryan Rodarmer
Claudia Arbelaez
Diagnosed with Vascular Ehlers-Danlos Syndrome in 2020 after severe health events.
Episode: Claudia Arbelaez
Bridget Porter Metz
Mother of Connor Metz, advocate for Loeys-Dietz syndrome awareness
Episode: Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome
Nancy Billon
Vascular Ehlers-Danlos Syndrome (VEDS) patient and mother.
Episode: Nancy Billon
Hugh Cox
A member of the vascular Ehlers-Danlos syndrome community and advocate
Vascular Ehlers-Danlos syndrome community
Episode: Hugh Cox

Reviews

4.9 out of 5 stars from 39 ratings
  • Great Interviews, very informative

    I just started binging this podcast after sending in a sample for DNA test for vEDS. I’ve suspected a connective tissue disorder ever since for ever but especially after researching the cause of a bilateral vertebral artery dissection after… existing? No bungee cord jumping, no football, no car accident, just minding my own business.

    Doctors said no, you don’t have Marfan’s. Yup, this is true. I finally found doctors who agreed with me and noted there are EDS subtypes and I have many of the sig... more

    Apple Podcasts
    5
    k-ji19
    United Statesa year ago
  • 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.

    Apple Podcasts
    5
    ConferenceApp
    United States4 years ago
  • 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!

    Apple Podcasts
    5
    SlimDeCo
    United States4 years ago
  • 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.

    Apple Podcasts
    5
    WyattStanley
    United States5 years ago
  • Interesting, informative and supportive podcast

    I’ve been listening to Katie’s podcast since soon after it started, and it’s amazing! Her interviews with other people with vEDS around the world are so informative, whether you have vEDS, another type of EDS or are simply interested in learning more about this condition. Thanks Katie for all your hard work to spread awareness!

    Apple Podcasts
    5
    FionaNZ
    United Kingdom5 years ago

Listeners Say

Key themes from listener reviews, highlighting what works and what could be improved about the show.

The podcast is considered a vital resource for those affected by rare conditions, emphasizing community support and awareness.
Listeners find the content to be validating and helpful, especially for those navigating similar health challenges.
There is high praise for the informative and empathetic interview style, with listeners appreciating the depth of personal stories.

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Talking Points

Recent interactions between the hosts and their guests.

Debbie Vaughan, sharing Josh Doss’s story with VEDS
Q: What do you want medical professionals to know about life with VEDS?
The pain is real for those with VEDS, and it's crucial to believe patients when they report extreme pain.
Debbie Vaughan, sharing Josh Doss’s story with VEDS
Q: What advice do you have for someone going through anything related to what you've experienced?
Accept help from loved ones and look for balance in life, even during tough times. Pursue interests outside of caregiving to maintain well-being.
Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome
Q: Did you have any advice for parents of kids with Loeys-Dietz?
Bridget emphasizes the importance of early diagnosis and advocating for proper tests, urging parents to trust their instincts regarding their child's health.
Bridget Porter (Metz) sharing Connor’s story with Loeys-Dietz syndrome
Q: What were some things about Connor that kind of indicated Loeys Dietz that you think were missed early on?
Bridget recalls various early signs including difficulties during birth, a large head, and developmental delays, which were initially misdiagnosed or attributed to other conditions.
Reconnecting with Bella Marin aka in_VEDS_tigator
Q: Was there any point while you were in the hospital that you felt like you lost hope?
Bella mentions that she was too sick to process her feelings during her hospital stay, and it didn't hit her until later that she had gone through a traumatic experience.

Audience Metrics

Listeners, social reach, demographics and more for this podcast.

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Frequently Asked Questions About Staying Connected

What is Staying Connected about and what kind of topics does it cover?

The content revolves around personal stories from individuals affected by vascular and aortic connective tissue conditions, with a strong emphasis on community support, awareness, and advocacy. Themes such as grief, resilience, and empowerment are prominent throughout the discussions, offering listeners both informative insights and emotional connection. Guest narratives highlight the struggles faced by those living with various syndromes, including vascular Ehlers-Danlos Syndrome and Loeys-Dietz syndrome, often carrying a message of hope and the importance of understanding these health conditions in the medical community. It is likely that the podcast uniquely blends personal journeys with expert insights, creating a platform that fosters ... more

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Which podcasts are similar to Staying Connected?

These podcasts share a similar audience with Staying Connected:

1. Up First from NPR

How many episodes of Staying Connected are there?

Staying Connected launched 7 years ago and published 118 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

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What guests have appeared on Staying Connected?

Recent guests on Staying Connected include:

1. Bella Marin
2. Marisa Hart
3. Tammy Asplund
4. Ryan Rodarmer
5. Claudia Arbelaez
6. Bridget Porter Metz
7. Nancy Billon
8. Hugh Cox

To view more recent guests and their details, simply upgrade your Rephonic account. You'll also get access to a typical guest profile to help you decide if the show is worth pitching.

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