The heart is the center of the cardiovascular system. Day in and day out, that one organ is responsible for almost everything that allows your body to go about its day. Therefore, if you suspect anything may be wrong with this vital organ, it is crucial to see your cardiologist.
For many people who have a family history of heart disease, high blood pressure or any other medical issues that may impact the heart, congenital heart disease or heart attacks are the most common problem. However, one genetic disorder that greatly affects the heart and is often overlooked is Marfan syndrome.
UnityPoint Health sits down with Erin Austin
Erin Austin, a marketing communication specialist at UnityPoint Health, discusses her experience with Marfan syndrome. See what she had to say:
As a small child, I knew it was important to teach people about Marfan syndrome. “I have a heart disorder,” I would say, informing new friends and teachers (and later, new coworkers and roommates) about the disease I had inherited from my father and been diagnosed with at birth.
“I have a heart disorder,” I would say, knowing it wasn’t technically true, but also knowing that calling Marfan syndrome a heart disorder was often easier for people to understand than saying what it really is: a connective tissue disorder. Connective tissue is like the glue that holds the body together. It connects and holds together all the parts – imagine it like the wooden framing of a house. Connective tissues touch about every internal part of the body; since Marfan is a connective tissue disorder, patients can often experience issues with many different body systems: skeletal, pulmonary, ocular and – perhaps the most important – cardiac.
The heart problems common to Marfan patients are the most dangerous, as they don’t have symptoms. The tissue that makes up the aorta – the main blood vessel coming from the heart – stretches and enlarges until it’s at risk of tearing. This aortic dissection is a painful, and often deadly, emergency situation. Because there are no symptoms of the aorta’s stretching, it’s important that a person with Marfan syndrome regularly visits a cardiologist to assess their heart.
Signs or Symptoms Experienced by Marfan Patients
Some Marfan syndrome features are easy to see, whereas others are not. Each person’s experience with Marfan syndrome is different. Some individuals may experience one feature where others may experience various combinations of features. Easy-to-see symptoms tend to include:
- Chest bone caves in or protrudes out
- Stretch marks not related to weight loss or weight gain
While Erin, a marketing communications specialist at UnityPoint Clinic, doesn’t experience every one of these symptoms, she certainly knows Marfan patients who do. Along with serving as a lifelong advocate for Marfan education and diagnosis, Erin volunteers for the Marfan Foundation’s annual conference, where she helps coordinate and lead the teen program. This has allowed her to meet many people from across the world with Marfan syndrome, a disease that affects about one in every 5,000 people. Pictured below is Erin (far right) with a group of other conference volunteers, including her father and sister who also have Marfan syndrome.
Erin’s hope is that if you recognize the symptoms of Marfan syndrome in yourself or a loved one, you will make an appointment with a UnityPoint Clinic cardiologist to get everything checked out. Several years ago, Erin was on vacation when a man approached her family and asked, “Have you ever heard of Marfan syndrome?” He had noticed that Erin had several physical features common to Marfan patients. She was already well-aware of her diagnosis, but had she not been, this man’s question could have led to a life-saving doctor’s appointment.
UnityPoint Health is Here for You and Your Loved Ones
Whether you have a family history of heart disease, or someone in your family shows signs indicating a heart condition, taking care of your heart is crucial. The cardiologists at UnityPoint Health are dedicated to the well-being of you and your loved ones. Continue to be proactive and schedule an appointment with your cardiologist today!
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