Staying Connected

This episode is about my album Glitter, and the pieces of my story with VEDS (Vascular Ehlers-Danlos Syndrome) that went into it. This album was produced through my record label, Sillybug Studios, LLC. Carry the Torch Music Video: https://youtu.be/8d2Z7Ozj-i8 Glitter Music Video: https://youtu.be/9GUohGLPg5s You can listen to Glitter wherever you stream your music. I also have vinyls available thr...

In this episode, we’re going to talk to Dr. Shaine Morris, a pediatric cardiologist at Texas Children’s Hospital in Houston, Texas who is well known in our community. Shaine was on the show in 2021, and in episode she joins us again to share updates in research and care for people with VEDS, Marfan syndrome, and Loeys-Dietz.  Links mentioned in the episode:  Join the CLARITY registry: clarityregis...

In this episode, we talk with Robyn Beer, who was diagnosed with VEDS, or Vascular Ehlers-Danlos syndrome, last year. One of her sons was also diagnosed. In this episode, she shares how she got her diagnosis, and how she is moving forward with it. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org , loeysdietz.org , and marfan....

In this episode, I have the honor of talking with Dr. Hal Dietz about his research in VEDS, Marfan, and Loeys-Dietz syndromes. Hal is well known in our community for his research and dedication to improving lives for people with these conditions.  Read more about Hal here: https://profiles.hopkinsmedicine.org/provider/hal-c-dietz-iii/2708017   Find more information, including support groups and we...

Today we’re going to talk with Paul Korotish, who was just diagnosed with VEDS last year after an iliac artery rupture.  Information mentioned in the episode: 2017 International Classification of Ehlers-Danlos syndromes: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31552 Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org...

Today we’re going to talk with Dr. David Murdock, a clinical geneticist at the University of Texas Health Science Center who is doing research in connective tissue conditions, including VEDS, Marfan, and Loeys-Dietz.  Information and links mentioned in the interview: Research program looking into new genes associated with aortic and vascular conditions:  https://med.uth.edu/internalmedicine/medica...

In this episode, we’re going to talk with Mike Osuna and Jeanette Garcia-Osuna about their son, Lucas’s, story with Loeys-Dietz syndrome, type 2. Lucas died at the age of 15 from an aortic dissection and Loeys-Dietz, which he was diagnosed with in autopsy.  Heads up, in this interview we will talk about what happened to Lucas that day. Please listen with care, take breaks, and seek support if you...

In this episode, we’re going to reconnect with Grace Barnhart, who was on the show a couple years ago sharing her personal story and caregiver story with Marfan syndrome. Grace is coming back on the show to talk about how her emotional experience with Marfan syndrome has changed over the last couple years, as well as her recent eye surgeries.   If you want to listen to Grace’s first interview on t...

Today we’ll be talking to Amos Marsters, who grew up with the knowledge of VEDS and a family history. Amos lost his father at 6 years old, and then his brother at 12 years old. He has also had a number of VEDS medical events. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org , loeysdietz.org , and marfan.org . You can also fin...

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. https://calendly.com/d/z7h-2cc-g33 Look forward to talking with you soon! Share Post Share Source

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 Loeys-Dietz syndrome, mosaically.  Quick note: In this episode, Carlos will share in detail what happened to Kaitlyn. Please listen with care.  Find more...

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 two VUS’s, or Variants of Unknown Significance, and what she’s been doing since her dissection to raise funds for research.  Links mentioned in the ep...

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 perforation and resulting complications. Bella can be found at @in_VEDStigator on Facebook, and @in_VEDS_tigator on Tik Tok and Instagram Find more informati...

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 has impacted her life, from sports, to seeing family members deal with Marfan, and her daily life and own surgery for pectus excavatum.  Content warning: Brief discussion of suicide. Find more information, including support groups and webinars, ab...

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.  Find more information, including support groups and webinars, about VEDS, Marfan, and...

Today we’re going to talk to Ryan Rodarmer, the director of The VEDS Movement, about his personal experience with aortic aneurysm and dissection, and his career as a genetic counselor working with connective tissue conditions and VEDS prior to his role at the Marfan Foundation.  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.or...

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 after her diagnosis, she also had a colon rupture.  Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org , loeysdietz.org , and marfan....

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 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 de...

Today we will be hearing from Debbie Vaughan about her experience with Vascular Ehlers-Danlos syndrome (VEDS) and her late husband, Josh’s, story with VEDS. Josh passed away not long after their son was born. Near the end of the interview, we’ll also hear how she’s seen things change for people with VEDS in the last 27 years. In the episode, we mentioned Ehlers-Danlos Type 6, which was misquoted a...

Today we’re 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 aortic dissection went undiagnosed for about two years, and after it was discovered, it led to her diagnosis with Marfan syndrome.  Find more information, including support groups and webinars, about...