Community Archives - Page 2 of 12

Awareness, Community March 11, 2025March 11, 2025

Provider to Patient: A Nurse’s Journey Through Loeys-Dietz Syndrome Diagnosis & Heart Surgery

When George (Jorge) Carrillo, MSN, RN was diagnosed with Loeys-Dietz syndrome in August 2024,...

Community member Andrew Rankins shares his first-person experiences with Marfan and an early-stage...

After a lifetime of medical issues that were at first unexplainable, then eventually labeled...

Advocacy, Awareness, Community June 26, 2024July 31, 2024

Kaitlyn was a vibrant, seemingly healthy 14-year-old girl who enjoyed musical theater and...

Awareness, Community, Quality of Life, Surgery December 19, 2023December 20, 2023

Guest writer Mazzy Sass is a junior at Schreiber High School in Port Washington, NY (also the...

Debra Theine has experienced Marfan syndrome’s impact as a daughter, patient, mother, and...

Awareness, Community, Know the Signs November 28, 2023November 28, 2023

Now that I see things more clearly about my son’s condition, I can tell you our story. My...