The Marfan Blog

Peace Through Connection

Nov 19, 2018 by The Marfan Foundation

Connection is at the core of the Snyder family’s resilience. Through a combination of close family connections and connections to the right medical care at the right time, this family of four is successfully navigating Loeys-Dietz syndrome times 3.

Topics: Marfan Community, Quality of Life, Loeys Dietz, Research, Marfan Conference

A Make-Over Because of the Marfan Annual Conference

May 26, 2018 by Auburn Ponder Anderson

Ashley Burks was 23 when her life changed. That year, 2005, she excitedly attended the Marfan Foundation’s Annual Conference in St. Louis. Upon arrival she was overwhelmed with emotion—for the first time in her life she saw other women who looked like her! Lean and lanky with long faces like hers, they looked like family. And as she got to know them, she was overjoyed that they had Marfan syndrome like she did, and they understood what she had gone through in her life.

Topics: Quality of Life, Living Successfully, Marfan Community, Marfan Conference

“If This is the Future of the Foundation, Then Victory is Around the Corner!” Teen Council members are leaders and role models

May 15, 2017 by Diane McKenzie

The Marfan Foundation’s Teen Council is a force to be reckoned with now. And they are clearly our future movers and shakers. This group of teens – who either have Marfan or a related disorder or have a sibling who is affected – is the voice of our adolescent community. Their primary focus is planning for the annual conference each summer; however, plans are underway for even greater involvement throughout the year.

Topics: Marfan Conference

Happy Month of Love

Feb 22, 2016 by Pamela Francesca

Reprinted with permission from This Blonde Brunette.

Mi Amor...A Special Valentine's Reminder To All.

They say when you know, you know. This must have been true in some cases. It feels that way in mine. February is known as the month of LOVE.

Topics: Marfan Conference, Marfan Community, Quality of Life

Krystal Camire - My Marfan Story

May 28, 2015 by Krystal Camire

My journey with Marfan syndrome has been a long and complicated one. I was first tested when I was 19. At that time, the tests were inconclusive. I have some of the features of Marfan syndrome, such as pectus carinatum (pigeon chest), and was very tall and thin, but my measurements were borderline. I had no known family history, and I hadn't developed any serious heart problems. They told me this is not uncommon because I was still young and many people don't begin to have problems until they are older. The doctors couldn’t confirm that I had Marfan syndrome, but they also couldn’t confirm that I didn’t have it. So here I was in limbo, and limbo was where I stayed for a long time.

Topics: Marfan Conference, Marfan Community