In June 2017, a midterm election had just occurred with the issue of pre-existing conditions and healthcare as one of the hot-button issues. Pre-existing conditions, in this context, are defined as a medical condition that a person already had before their healthcare benefits went into effect. In general, the Affordable Care Act, implemented in 2014, included that pre-existing conditions must be protected by insurance and insurance companies cannot charge a person more for having a pre-existing condition. The current debate concerns the extent to which the expenses resulting from these conditions should be covered under insurance.
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.