Staying Connected

06/05/2025

I'm getting ready to record another season of Staying Connected, during the summer (after July).

This season will explore different topics and feature probably 3-5 community members per condition (VEDS, LDS, Marfan) per episode. I've not ironed out all the topics, but want to focus on different ways our community members deal with things like doctors misunderstanding their condition, pursuing parenthood, at what point decisions were made on non-emergency surgery (and how those decisions were made), the decision to try medications, how the conditions affect transgender care, etc. Really a community-focused series for community.

If you are interested in being part of this, please let me know by sending a short email with your name, which condition you or your family member has, and topic you are interested in, to [email protected].

03/01/2025

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

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 le

27/12/2024

In today’s episode, we’re going to talk to Carmen David, sharing 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 two VUS’s, or Variants of Unknown Significance, and what she’s been doing since her dissection to raise awareness, support, and funds for research.

Thank you, Carmen, for everything you do for the community!

https://staying-connected.blubrry.net/2024/12/27/carmen-david/

20/12/2024

Today, we’re going to talk to Bella Marin, who was previously on the show to talk about her story with , or Vascular Ehlers-Danlos syndrome. In today’s episode, she is returning to the show to talk about her recent experience with a bowel perforation and resulting complications, including pleural effusion, a fistula, a hernia, wound dehiscence and more.

Thank you, Bella, for coming back on the show and for everything you do for our community

13/12/2024

In this episode, we talk to Marisa Hart, who was diagnosed with Marfan syndrome as a child. Marisa has an extensive family history and shares how Marfan syndrome has impacted her life, from sports, to seeing family members deal with Marfan, and her daily life and own surgery for pectus excavatum. We also talk about accessibility issues and language barriers for healthcare.

Thanks, Marisa, for sharing your story on the show!

https://staying-connected.blubrry.net/2024/12/13/marisa-hart/

06/12/2024

Today we’re going to talk to Tammy Asplund about her story with Loeys-Dietz syndrome, which she was diagnosed with at 52 after her son found out he had an aneurysm and also needed open heart surgery. Once he was diagnosed, it explained their family history and Tammy got tested and had open heart surgery as well.

Listen wherever you get your podcasts, or at:

https://staying-connected.blubrry.net/2024/12/06/tammy-asplund/

Today we’re going to talk to Tammy Asplund about her story with Loeys-Dietz syndrome, which she was diagnosed with at 52 after her son found out he had an aneur

29/11/2024

Today we’re going to talk to Ryan Rodarmer, the director of The VEDS Movement about his personal experience with aortic aneurysm and dissection, mitral valve replacement, and his career as a genetic counselor working with connective tissue conditions and VEDS prior to his role at The Marfan Foundation. We'll also talk about his hope for the future for people with VEDS.

https://staying-connected.blubrry.net/2024/11/29/ryan-rodarmer/

22/11/2024

Claudia Arbelaez joins the show to share her story with Vascular Ehlers-Danlos syndrome, which she was diagnosed with in 2020 after a kidney infarction and vascular rupture. A couple years after her diagnosis, she also had a colon rupture and then a successful reversal for the bag. In this episode, she shares what all of these experiences were like, and how she moves forward with her life.

15/11/2024

Bridget Porter (Metz) joins the show to share her son, Connor’s, story with Loeys-Dietz syndrome, which he was diagnosed with after he died of Loeys-Dietz causing an aortic dissection at the age of 13. Connor was seen by a geneticist a few years before he died, but was told there was no need for a genetic test. Bridget and her family have been involved in efforts to raise awareness and funds for research since his death in 2020. Listen to this episode anywhere you get your podcasts or on the web at:

https://staying-connected.blubrry.net/2024/11/15/bridget-porter-metz-sharing-connors-story-with-loeys-dietz-syndrome/

07/10/2024

Great article raising awareness to VEDS after the tragic loss of Brennen at only 12. So much love to his family and our VEDS community. ❤️💔

https://fox4kc.com/news/local-childs-rare-death-leads-to-an-inspired-community-hoping-for-a-cure/?fbclid=IwZXh0bgNhZW0CMTEAAR25Bsuc_NRMDOjpiyprNB0z9rtk5yN-RXssr956m6IRDfAAFzx2yEo3KJ4_aem_t5F81rsIGQCApxJVq2ieQw 💔

Testing revealed a gene mutation and a diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS). Because it’s so rare he wasn’t diagnosed until 2021 at the age of 10.

06/10/2024

It's VEDS Action Month and I am tired of losing people in our community with VEDS and similar conditions like Marfan and Loeys-Dietz because they were improperly diagnosed or just plain undiagnosed.

Please help me get more people properly diagnosed by sharing this video.

Just out here making my opinion really apparent today. I know genetic testing can be expensive, and there should be resources to help people cover that testing cost if there insurance doesn't cover it. It shouldn't have to be a reason to not get tested. These are peoples' lives on the line.

Learn more about VEDS at The VEDS Movement. More about Loeys-Dietz at Loeys-Dietz Syndrome Foundation. More about Marfan at The Marfan Foundation

Too many people are misdiagnosed without a genetic test and I'm so tired of losing my friends and community members. The views, information or opinions in th...

16/09/2024

To my VEDS/Marfan/LDS community!

If you’d like to share your story on the next season of Staying Connected, pre-interviews are starting this week through Oct 4. I’d love to talk to you about your story ❤️

It’s pretty easy to book a time on my calendar using Calendly. Here’s a link! https://calendly.com/translucentone/30min

Feel free to share with someone you know who has one of these conditions or is connected to the VEDS, Marfan, or Loeys-Dietz community that may want to share their stories too! ❤️

This meeting is a pre-podcast meeting to discuss your story and any details you want to talk about prior to scheduling a podcast interview.