The Marfan Blog

April 16, 2025April 16, 2025

Linzy’s Story: Dislocated lenses, Marfan diagnosis, multiple procedures, and career-affirming understanding

Linzy Brown's story of life with Marfan syndrome is deeply connected to her eyes and heavily...

Quality of Life April 13, 2025April 13, 2025

Patrick’s 65+ Years with Marfan Syndrome: “I’ve had a normal life for the most part…”

Patrick Maguire is retired now and we are so grateful that he spends a lot of his free time...

Awareness, Family Planning, Quality of Life April 8, 2025April 9, 2025

Leticia’s Pregnancy Story: “I know how to take care of myself…”

Decisions around family planning, pregnancy, and related considerations are very personal. We...

Awareness March 14, 2025March 14, 2025

“Marfan just happens to be a part of me…” Andrea’s Story

Andrea Aguiar shares her first-person experiences living with Marfan syndrome in this guest...

Awareness, Community, Conference March 11, 2025March 11, 2025

Teen Voices: Overcoming Challenges

Being a teen isn’t always easy, and teens with genetic aortic and vascular conditions like...

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,...

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