Staying Connected – Staying Connected

I was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS), in 2017. In this episode, I’m joined by my brother, Jacob Frederick, to talk about his experience with my diagnosis and hospitalizations. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your … Read More Read More

Allison’s son, James, was diagnosed with Marfan when he was 3 years old, following a lens dislocation. James is now 8 years old, and in this episode, Allison talks about his diagnosis story, how they handle communicating Marfan with James, research, navigating the US healthcare care system, and more. Find more information, including support groups … Read More Read More

Grace Barnhart was diagnosed with Marfan syndrome when she was 4 years old. She’s also a caregiver to her dad who has Marfan syndrome. In this episode, she talks about growing up with Marfan, getting involved in advocacy and community at a young age, medical events she’s dealt with of her own and of her … Read More Read More

Mary Meyers’ daughter, Adalynn, was diagnosed with Loeys-Dietz Syndrome when she was about a year and half old. In this episode, Mary tells the story of Adalynn’s diagnosis following problems with feeding, food allergies, cleft palate, hypermobility, and more, as well as her experience as a parent learning to live with this diagnosis and become … Read More Read More

I (Katie) am currently the hospital with a renal artery dissection and kidney infarction. This show will take a pause, and the season will be resumed when I am feeling up to it. Thanks for all your support!

Brent Tuinstra was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in his thirties after a bowel perforation. In this episode, Brent talks about the experience with the bowel perforation, the misdiagnosis of Crohn’s that came before his VEDS diagnosis, what it felt like getting diagnosed with VEDS, and how he’s gotten involved since. Find more information, … Read More Read More

Dominga Noe was diagnosed with Marfan syndrome at 9 years old following her father’s aortic dissection. Since her diagnosis, she’s become very involved in the community, and now runs the teen program as an employee of The Marfan Foundation. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, … Read More Read More

Delaney Kinstner was diagnosed with Vascular Ehlers-Danlos Syndrome after a serious medical event 10 days after delivering her child caused her to be sedated and on ECMO for several weeks. Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org. If you would like to share your … Read More Read More

Kristen St. John, whose daughter Marcie was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, shares her and Marcie’s experience with diagnosis and life with VEDS, including a bowel perforation that Marcie had at 4 years old. Find more information about VEDS, including support groups and medical webinars, at thevedsmovement.org If you would like to share … Read More Read More

Peter Donato, who was diagnosed with Loeys-Dietz Syndrome, or LDS, in fifth grade, shares his experience growing up with LDS, being involved in the community and the teen program at The Marfan Foundation, and its division, the Loeys-Dietz Syndrome Foundation, and adapting his love of sports to his life with LDS while maintaining his health. … Read More Read More

Jacqui Fish, whose 24 year-old son George has vascular Ehlers-Danlos Syndrome (VEDS) shares her experience as mom and George’s experience with VEDS, including a number of serious medical events, including a bowel perforation, artery dissections, posterior reversible encephalopathy syndrome (PRES), and pneumothorax. Find more information about VEDS including support groups and medical webinars, at thevedsmovement.org Links … Read More Read More

In this episode of Staying Connected, we talk to Ben Weisman, who was diagnosed with Marfan syndrome at birth and is the third generation in his family to live with Marfan syndrome. Ben shares his story of growing up with Marfan, finding and building community, his involvement in the teen program at the Marfan Foundation, … Read More Read More

In this episode of Staying Connected, we talk to Mikala Tingley, whose brother, David had Vascular Ehlers-Danlos Syndrome (VEDS). David passed away at the age of 24, and was diagnosed with VEDS after his death. Mikala is joining to share his story with VEDS. Please be advised, this episode does contain some graphic details about … Read More Read More

In this episode of Staying Connected, we talk to Maya Brown-Zimmerman, who was diagnosed with Marfan syndrome as a child. Because of her atypical features and medical events, her diagnosis was questioned several times and she was tested for VEDS and Loeys-Dietz before a genetic test revealed she does have an FBN1 mutation, associated with … Read More Read More

In this episode of Staying Connected, we talk to Ashton Tanner, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) about a year ago after a spontaneous coronary artery dissection, or SCAD, and her mother’s medical event a few weeks prior led to some puzzle pieces finally coming together. Find more information about VEDS, including support … Read More Read More

The voices you’ll hear in the upcoming season of Staying Connected, featuring community members who will be sharing their stories with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan syndrome, and Loeys-Dietz syndrome. Episodes available every other Saturday starting July 1, wherever you listen to podcasts. You can support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone … Read More Read More

Elissa Hanneman was initially misdiagnosed with Classical Ehlers-Danlos Syndrome (CEDS) as a child, but a colon perforation during her pregnancy prompted genetic testing for Vascular Ehlers-Danlos Syndrome (VEDS). Years after her diagnosis, Elissa lost all of her intestines in a two-year hospital stay due to complications from VEDS. Please be advised that in this episode, we … Read More Read More

Maria Vowles and Mandy Carpenter, who lost their daughter, Andie, to Vascular Ehlers-Danlos Syndrome (VEDS) and founded Adventuresinlove4Andie, join to talk about Andie’s story. In this interview, we will talk about Andie’s diagnosis of VEDS, what happened to her, and what Maria and Mandy have done with Adventuresinlove4Andie to raise awareness and support for VEDS. … Read More Read More

Part 2 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Adrian joins to discuss the details of the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS (Vascular Ehlers-Danlos Syndrome) in the United States. Learn … Read More Read More

Part 1 of a two-part interview featuring Chris Schelling, CEO and Founder of Acer Therapeutics, and Dr. Adrian Quartel, Chief Medical Officer of Acer Therapeutics. In this episode, Chris joins to discuss the history of Edsivo, or celiprolol, and the DiSCOVER trial, a clinical trial for Edsivo enrolling people with VEDS (Vascular Ehlers-Danlos Syndrome) in … Read More Read More