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.
In addition to medications and surgery, your doctor may recommend lifestyle changes to support organs and the bones that can be affected by Marfan syndrome.
To help prevent foot problems, which can include a weakening of ligaments and joints, maintain a healthy weight and wear low-heeled shoes that fit well and provide support.
Your NYU Langone cardiologist or cardiovascular surgeon may recommend reducing stress on the aorta by refraining from exercise that’s more strenuous than walking or light cycling. Avoid contact sports and heavy weight lifting.
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. NYU Langone’s Tobacco Cessation Programs can help.
Also, avoid any activity with a risk of atmospheric pressure changes, such as scuba diving or skydiving, which can increase the risk of a collapsed lung.
People with Marfan syndrome sometimes have overcrowded teeth and a posterior crossbite, meaning the upper teeth align inside the lower teeth instead of outside when you bite down. 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.
Though Marfan syndrome doesn’t interfere with thinking or learning, surgeries and the physical and emotional pain of living with the condition can interfere with a child’s performance at school.
You may consider contacting your child’s school about obtaining an individualized education program, known as an IEP, or a 504 plan, which provides special education services for your child. This may include providing alternatives to gym class and support from special education teachers.
If you are pregnant or planning to be, talk to your doctor about how to manage the risks associated with pregnancy, including aortic dissection.
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, which helps people with disabilities perform everyday activities.
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.
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