New Survey Conducted by The Marfan Foundation Finds That One in Five Patients Had Surgery Before Getting Marfan Diagnosis

marfan foundation logoOne in five people with Marfan syndrome had some form of surgery before they were diagnosed with the potentially life-threatening condition, according to a survey of 1277 people conducted by The Marfan Foundation from July 21-August 18, 2013. The survey was conducted to identify the signs that lead to a Marfan syndrome diagnosis and better understand the diagnosis process that people go through.

Alarmingly, of those who had surgery before they were diagnosed, 20 percent had an operation to repair a tear in their aorta, the large artery that takes blood away from the heart. In addition, 27 percent had an operation on tendons, ligaments, or joints; 24 percent on their back; 22 percent on bones; and 14 percent to repair a chest deformity.

“It is concerning that so many people had surgery to repair their aorta before they got their Marfan diagnosis,” said Alan C. Braverman, MD, Director of the Marfan Syndrome Clinic at Washington University School of Medicine and Chair of The Marfan Foundation’s Professional Advisory Board. “If they were able to be diagnosed with Marfan syndrome first, they could have undergone preventative aortic surgery before the aorta dissected. Many patients do not survive acute aortic dissection. People with Marfan syndrome who undergo surgery for an enlarged aorta may often expect to live a normal lifespan. However, the long-term outcome after an aortic tear occurs is not nearly as favorable.”

Read more: Digital Jounal