Empowering Health

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Marfan Syndrome Survivor Tracey Fitzgerald Launches Support Group for Others

Born a normal healthy child, Tracey Fitzgerald was diagnosed with Marfan Syndrome at 25 and has since started a support group for others affected by this disorder.

 

Tracy Fitzgerald appeared to be a normal, healthy child. Sports came naturally to the tall, slender youngster, who, during her middle school years, easily excelled at softball and basketball. Little did she know that her tall stature and long fingers — the very things that drew compliments while she was growing up — were actually traits of a life-threatening condition. When she turned 25, Ms. Fitzgerald was diagnosed with Marfan Syndrome.

Marfan Syndrome is an inherited, connective tissue disorder affecting one in 5,000 people. Since connective tissue provides structural support to tendons, ligaments, blood vessel walls, cartilage, heart valves and many other body structures, Marfan Syndrome results in an overall system that isn’t as sound as it should be.

According to Aliya Browne, MD, a cardiologist at Hunterdon Medical Center, “The most common effects of Marfan Syndrome on the heart are mitral valve prolapse and dilatation of the aortic root. Other cardiac manifestations include mitral and aortic valve regurgitation and aortic dissection.” If undiagnosed, a person with Marfan Syndrome may be at severe risk of sudden death due to rupture of the aorta. According to Dr. Browne, Marfan Syndrome can have a serious impact on the heart and heart valves, causing system weakness and leakage from enlarged valves. Undiagnosed or left untreated, a valve may rupture, resulting in sudden, immediate death.

Seven years after her diagnosis, Ms. Fitzgerald was faced with the need for heart surgery. “I remember that moment when the doctor told me it was necessary to repair my aorta. To look at me, you would never guess I have this condition. I was feeling the best I ever had, but underneath it all, my aorta had been quietly enlarging.”

Now recovered from surgery, Ms. Fitzgerald has adopted a new outlook. “Life is different with Marfan’s,” she says. “As with any serious condition, some days are great, and others are a struggle. But I made a lot of changes and, for the most part, feel better than ever since having the surgery. I’m very grateful to be alive and to be able to manage my condition. Unfortunately, not everyone is as fortunate.”

Ms. Fitzgerald received tremendous support from her husband, family and friends, and feels this support made a major difference in her recovery. This understanding is why she has started a support group for others with Marfan Syndrome.

“It’s vital to have someone to talk to who can relate to how you are feeling. No one facing such hardships should ever feel alone,” explains Ms. Fitzgerald.

  Last Reviewed: July 2007
 
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