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.

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 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 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

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 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 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 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

Kristen St. John, whose daughter Marcie was diagnosed with Vascular Ehlers-Danlos Syndrome, or VEDS, shares her and Marcies experience with diagnosis and life with VEDS, including a bowel perforation

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 Foundat