Patient Testimonial: Loeys-Dietz Syndrome
Mary Harris, Age 43
"It's a catastrophic disease," says Mary Harris of Loeys-Dietz syndrome (LDS). And indeed it has been for her family. Out of 12 siblings, three of her brothers died young and one of her living brothers and one of her sisters, like Mary, also carry the gene.
LDS is an extremely rare genetic disorder. Only about 350 individuals have been diagnosed worldwide. It affects the body's connective tissues and its symptoms can vary widely. For Mary, it affects her arteries, causing aneurysms to develop throughout her body, compromising her heart. They symptoms began when she was 17.
For more than two decades, Mary has been under the care of Dr. Kirk Peterson. She has undergone multiple surgeries to repair aortic dissections - a potentially life-threatening condition that involves bleeding in the aorta. Her most recent surgery in July 2011 was the most complex, involving both the treatment of an aortic dissection and the removal of an abdominal aneurysm.
Looking at Mary today, you would have no inkling of the ordeal she has been through. This petite, vivacious woman radiates health and well-being. She works as a registered nurse and enjoys spending time with her school teacher husband and their 11-year-old daughter. She does have some restrictions, such as not lifting heavy weights. But, as Mary says, "I'm not one to wallow in self-pity. I just deal with what comes my way and move on."