The Marfan Blog

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

What Fulfills You?

Aug 16, 2016 by Molly S. Weiss

When you think about your life as an able-bodied person, what fulfills you? Does going to work and seeing your colleagues make you feel successful? Do you feel better about yourself when your boss offers you that promotion you’ve been striving for? You worked really hard for that promotion and you deserve it. How about when you see the balance of your bank account? Do you have a little bit leftover after your bills are paid? I’m sure it’s nice to go into work Monday morning with that new handbag or a pair of earrings you’ve been eyeing at Macy’s for a while. Those things, they fulfill you, make you feel like a person put on Earth for a reason. You went to college and earned a degree, and now you can do what you were taught how to do. It’s a very fulfilling way to live.

Topics: How the Body is Affected, 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

Improving Your Quality of Life: An Introduction to Reflexology

Jun 28, 2016 by Ken Cook

Reflexology can help reduce pain and increase energy. It is not a cure, but it can make the complications that arise due to Marfan easier to live with and thereby improve quality of life.

Topics: 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