Support for Marfan Syndrome

Marfan syndrome is a lifelong condition, and doctors at NYU Langone provide ongoing support to help people manage the symptoms and improve their quality of life. You may need specialized care to prevent or slow serious medical conditions that can be associated with Marfan syndrome. It’s important to see your doctor or doctors regularly for checkups and imaging tests.

Lifestyle Changes for Marfan Syndrome

In addition to medications and surgery, your doctor may recommend lifestyle changes to support the organs and bones that can be affected by Marfan syndrome.

For the Bones

To help prevent foot problems, which can include a weakening of ligaments and joints, our doctors recommend maintaining a healthy weight and wearing low-heeled shoes that fit well and provide support.

For the Heart

Your NYU Langone cardiologist or cardiovascular surgeon may recommend reducing stress on the aorta by refraining from exercise that is more strenuous than walking or light cycling. Doctors also recommend avoiding contact sports and heavy weight lifting.

For the Lungs

Because Marfan syndrome can cause serious lung problems, such as a collapsed lung, it’s important that you don’t smoke—or quit if you do. Specialists in NYU Langone’s Tobacco Cessation Programs can help.

Also, consider avoiding any activity with a risk of atmospheric pressure changes, such as scuba diving or skydiving, which can increase the risk of a collapsed lung.

For the Teeth

People with Marfan syndrome sometimes have overcrowded teeth and a posterior crossbite, meaning that when they bite down, the upper teeth align inside the lower teeth instead of outside. If you decide to have this condition corrected, tell the orthodontist that you have Marfan syndrome and are at increased risk of endocarditis, a complication of oral surgery that causes inflammation in the lining of the heart chambers and valves.

Endocarditis occurs when bacteria are released into the bloodstream during surgery or even during routine dental work. Before any dental procedures, consult your NYU Langone doctor, who may recommend that you take antibiotics before the procedure to help prevent this condition.

For Women

If you are pregnant or planning to be, talk to your doctor about how to manage the risks associated with pregnancy, including aortic dissection.

Rehabilitation After Heart Surgery

People with Marfan syndrome may need rehabilitation after heart surgery to help them transition from the hospital to home. NYU Langone’s Rusk Rehabilitation offers inpatient and outpatient services. Teams of specialists, including physiatrists and occupational and physical therapists, provide pain management, psychological services, physical therapy, and occupational therapy.

Emotional Support for Marfan Syndrome

Living with a chronic condition can affect you emotionally. Your NYU Langone doctor may refer you to a psychologist or social worker to address the emotional effects of Marfan syndrome, which can include anxiety and depression. Your doctor can also recommend support groups that can help you cope.