Marfan Syndrome Treatment

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While Marfan syndrome has no cure, treatments can help delay or prevent problems, especially when started early.

In addition to your primary care provider, your healthcare team for Marfan syndrome may include:

• A cardiothoracic surgeon
• A genetic counselor
• Doctors who specialize in the cardiovascular system (cardiologist), eyes (ophthalmologist), and bones and joints (orthopedist)
• Nurses

Your provider may recommend blood pressure medicines to relieve any strain on or bulging of the aorta. These medicines help your heart beat slower and with less force. The most common are beta blockers or angiotensin receptor blockers (ARBs). Side effects of these medicines may include feeling tired, lightheaded, or sick in your stomach.

If you can’t tolerate the side effects from beta blockers or ARBs, your provider may prescribe calcium channel blockers or angiotensin converting enzyme (ACE) inhibitors.

If your aorta is larger than normal, your provider may recommend surgery to repair or replace part of the aorta to prevent it from rupturing or tearing open. If you have an aortic dissection, which is a tear in the inner layer of the blood vessel’s wall that allows blood to flow between the layers, or if the aorta ruptures or completely tears, you will need emergency surgery to repair the aorta.

Your aortic valve may also be replaced with a mechanical valve or valve made from animal tissue. The valve may be replaced during an open surgery to repair the aneurysm .

If you have mitral regurgitation — which occurs when your blood flows backward into your left atrium — your provider may recommend surgery to repair or replace your mitral valve.

Your provider may also recommend surgery for other reasons:

• Repair severe scoliosis with a brace or other device to prevent the condition from getting worse
• Prevent a chest that sinks in or sticks out from pressing on the lungs and heart
• Repair a collapsed lung
• Fix a dislocated lens or detached retina in the eye