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,...
The Marfan Blog
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...
Moving Day Leads to VEDS Diagnosis, New Ways to Thrive
Maia Fleener wanted to get ready for living solo at college. So, when her family was making a...
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...
Life After a VEDS-Related Dissection: Chris Underwood’s Story
“Up until the dissection, I had no idea.” Chris Underwood’s mom had died of...
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