Blog Category: Know the Signs

Diagnosis, Know the Signs, Quality of Life August 16, 2016February 24, 2021

What Fulfills You?

When you think about your life as an able-bodied person, what fulfills you? Does going to work and...

Community, Know the Signs, Quality of Life July 20, 2016February 24, 2021

Linh Ngo: My Marfan Story

Part 1 of Linh Ngo’s Marfan story is reprinted here with permission from the author. You can...

Advocacy, Awareness, Know the Signs May 22, 2014February 25, 2021

Ben Carpenter – My Marfan Story

Before I share my story, I want to clarify that the title of my book, “The Bigs,” has nothing...

Know the Signs March 27, 2014February 25, 2021

Weight Gain and Marfan Syndrome – Why Can’t I Put On Weight?

Many people with Marfan syndrome have difficulty gaining weight, especially when they are...

Conference, Know the Signs February 6, 2014February 25, 2021

Flaunting Every Single Bit of My DNA – Living with Marfan Syndrome

Though I stand at a measly 5'8 for a “Marf,” as a freshman in high school, I towered over my...

Know the Signs September 16, 2013February 25, 2021

Aging with Marfan Syndrome: 5 Common Questions

Well, for many people, this just brings up more questions. Living longer is great, but aging comes...

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