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,...
Blog Category: Awareness
Finding Purpose in New Places: Traveling the World Alongside Life with Loeys-Dietz Syndrome
(Advisory: This Story Discusses Aortic Dissection) Throwing Caution to the Wind Moving...
Scan to Save: Growing up with Marfan, being diagnosed with cancer
Community member Andrew Rankins shares his first-person experiences with Marfan and an early-stage...
“And There My Life Began”: Trip of a Lifetime Leads to Conference, Loeys-Dietz Diagnosis
After a lifetime of medical issues that were at first unexplainable, then eventually labeled...
Lineman Loses Life to Misdiagnosed Aortic Dissection, Saves Family Members
40-year-old Derrick Werner was doing his job as a lineman. He was in the bucket working on a...
Natalie’s Legacy: Saving Other Families from Aortic Dissection Loss Due to Undiagnosed VEDS
CAUTION: This story focuses on a detailed account of fatal childhood aortic dissection; the...
Aortic Dissection Survivor David Noe’s Experience Leads to Family Members’ Marfan Diagnoses and Preventative Surgeries
“All of a sudden, I just had a crushing chest pain.” David Noe, who had spent large...
Have a question? We can help.
Contact our Help & Resource Center by
submitting a question via the link below.
Together, We Can Know the Signs
and Fight for Victory
