Quality of Life Archives - Marfan Foundation

“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...

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...

As a teen with a connective tissue condition, building relationships with others who “get” you...

Awareness, Community, Quality of Life January 13, 2022January 13, 2022

My story about Marfan syndrome mostly takes a back seat to my husband's. He's the one with Marfan,...

Awareness, Community, Quality of Life September 8, 2021September 8, 2021

On a crisp day in 2010, Pam Moultrup entered the hospital. She checked in at the reception desk...

Creative, free-spirited, business owner, and recent college graduate, Adariel Lee, of the Bronx,...