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.
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.
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.
In recent blog posts, we shared Alix McLean Jennings’ story about how she worked with a nutritionist to bring her nine-year-old daughter Cassie, who has Marfan syndrome, up to a healthy weight. Then, we featured the first part of Alix’s Q & A with her nutritionist, Hien Nguyen-Le. Today, we offer the second and final part of the interview with Hien, the nutritionist.
We recently shared Alix McLean Jennings’ story about how she worked with a nutritionist to bring her nine-year-old daughter Cassie, who has Marfan syndrome, up to a healthy weight. Today, in The Marfan Blog, we share the first part of Alix’s Q & A with her nutritionist, Hien.