The Marfan Blog

When it Feels Like Marfan is Winning

Nov 1, 2016 by Latasha Doyle

About six months ago, I made the decision to “retire” from my career as a full time nanny at the ripe old age of 27. I didn’t make that decision because it was time to move on, or because I was just so over being a nanny - quite the opposite in fact. I retired because my body could no longer keep up with the kids I cared for. I retired because Marfan syndrome wasn’t going to let me do the work I loved any longer.

Topics: Marfan Community, Living Successfully, Quality of Life

Sinclaire’s Story from the Heart

Sep 8, 2016 by Sinclaire Schuetze

Most people affected by Marfan syndrome experience a life-changing moment when they or a loved one is first diagnosed. My Marfan journey, however, has always seemed a part of my life with no clear beginning. My mother was the first person in our family to be diagnosed with Marfan syndrome. It had been my grandmother’s just-by-chance reading of a newspaper article about the disorder that led to my mother’s diagnosis at age 7. Fortunately, when I was a very young child, my doctors knew to look for the physical characteristics right away and, when I was about 3 years old, it was determined that I too had Marfan syndrome. When I started elementary school, of course there were little issues here and there, such as being taller and thinner than most kids, sitting out for certain activities during gym class, and taking annual trips to Johns Hopkins Hospital for checkups. For the most part, however, I thought of Marfan syndrome as no big deal. It was something I had, like hazel eyes and brown hair.

Topics: How the Body is Affected, Marfan Community, Diagnosis, Living Successfully, Quality of Life

Linh Ngo: My Marfan Story

Jul 20, 2016 by Linh Ngo

Part 1 of Linh Ngo’s Marfan story is reprinted here with permission from the author. You can read her entire four-part Marfan Tale on her blog.

Topics: How the Body is Affected, Marfan Community, Quality of Life

When People Don't Get It

May 13, 2016 by Latasha Doyle

As an individual with Marfan syndrome, you've most likely had that awkward encounter with a coworker, classmate, friend, or even family member where you have to explain your condition. Sometimes, even after you've disclosed the information, they just seem to forget that you've actually got a condition that can affect nearly every aspect of your life.

Topics: Marfan Community, Living Successfully, Quality of Life

College with Loeys-Dietz syndrome

Mar 10, 2016 by Peter Donato

College can be one of the most fun periods in a person’s life, yet it can also be one of the most stressful. For someone like me who has Loeys-Dietz syndrome, health concerns can add another layer of stress to the college years. When I had to make my decision on where I wanted to go to college, I not only took into account school size, but I also took into account the closest hospital and where they send students in case of an emergency. I ended up deciding on a small college in Boston that was everything I was looking for and, as an added bonus, is just down the street from where most of my doctors are. Being near my doctors was good for me because the summer before I started my freshman year, I had to have my aortic root replaced. I went to my freshman orientation in the summer and the next day I went to the hospital for my surgery.

Topics: Marfan Community, Living Successfully, Quality of Life