The Marfan Blog

Sinclaire Schuetze

Sinclaire Schuetze is a 15-year-old sophomore at Hempfield High School in Lancaster, PA. She plays piano and cello and dances with the Lancaster Liederkranz German folk dancing Kindergruppe. She is the editor of her school newspaper and is active in the Anchor Club and Key Club, which are community service clubs in her school.

Recent Posts

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