Staying Connected

Staying Connected


Latest Episodes

Michelle Lucena
December 16, 2023

Michelle Lucena was diagnosed with VEDS, or Vascular Ehlers-Danlos syndrome, after two carotid artery dissections. In this interview, we talk about how these dissections affected her military career,

Taborski McClellen
December 09, 2023

Taborski McClellen was diagnosed with Marfan syndrome between 12-13 years old. In the time since his diagnosis, hes had two retinal detachments, a lung collapse, and an aortic dissection. In this int

Jacob Frederick (Katie’s brother)
December 02, 2023

I was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS), in 2017. In this episode, Im joined by my brother, Jacob Frederick, to talk about his experience with my diagnosis and hospitalizations.

Allison Pullins
November 25, 2023

Allisons 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

Grace Barnhart
November 22, 2023

Grace Barnhart was diagnosed with Marfan syndrome when she was 4 years old. Shes also a caregiver to her dad who has Marfan syndrome. In this episode, she talks about growing up with Marfan, getting

Mary Meyers
November 18, 2023

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 Adalynns diagnosis following problems with fee

Message from Katie
November 11, 2023

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 su

Brent Tuinstra
November 04, 2023

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 mi

Dominga Noe
October 28, 2023

Dominga Noe was diagnosed with Marfan syndrome at 9 years old following her fathers aortic dissection. Since her diagnosis, shes become very involved in the community, and now runs the teen program

Delaney Kinstner
October 21, 2023

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