Living With Marfan Syndrome

New advances have been made in the early diagnosis and treatment of Marfan syndrome. It's now possible for people who have Marfan syndrome to live longer and enjoy a good quality of life. Many people who have Marfan syndrome and are properly diagnosed and treated may live an average lifespan.

If you have Marfan syndrome, talk to your doctor about ongoing care and what types of physical activity are safe for you. If you're thinking about becoming pregnant, you should discuss the possible risks with your doctor.

Ongoing Care

You'll need regular checkups with the doctor who is coordinating your care and other medical experts, including:

• Regular visits with your cardiologist (heart specialist) to check for problems with your heart valves and aorta. You will have routine echocardiograms to check your heart.
• Annual checkups with an orthopedist (bone specialist) to look for changes in your spine and breastbone.
• Regular eye exams with an ophthalmologist (eye specialist) to find and treat eye problems early.

Let your doctors and dentists know if you've had a composite valve graft. If you've had this type surgery, you're at increased risk for endocarditis-a heart infection.

Your health care providers, including dentists, may give you antibiotics before certain medical or dental procedures that could raise your risk for endocarditis.

Take all your medicines as your doctor prescribes.

Emergencies

If you have Marfan syndrome, you're at risk for aortic dissection. This is a condition in which the aorta tears and leaks blood. (The aorta is the main blood vessel that supplies oxygen-rich blood to the body.) Aortic dissection is a life-threatening condition.

The main symptom of aortic dissection is severe pain in either the front or back of your chest or abdomen (stomach). The pain can travel upward or downward. If you have symptoms of an aortic dissection, call 9-1-1.

To prepare for an emergency, you should:

• Carry an emergency alert card. This card lists important information about your health. It can help medical personnel and others care for you during an emergency. You can order an emergency alert card from the National Marfan Foundation.
• Tell the people you see regularly, such as family, friends, or coworkers, that you're at risk for aortic dissection. Describe the symptoms of this condition, and tell them to call 9-1-1 if you have these symptoms.

Emotional Support

Having Marfan syndrome can be stressful. However, you can do things to lower your stress and anxiety.

Ask your doctor about support groups in your area for people who have Marfan syndrome. If you feel sad or depressed, seek help from a mental health professional. Your family and friends also can give you support.

Smoking

If you smoke, quit. People who have Marfan syndrome are at increased risk for lung problems. Smoking raises the risk even more. Talk to your doctor about programs and products that can help you quit smoking. Also, try to avoid secondhand smoke.

Physical Activity

Physical activity can help you feel better, manage your weight, and protect your bones. Talk to your doctor about what types of physical activity are safe for you. Some physical activities can increase your blood pressure. This puts extra strain on your heart.

You will likely need to avoid strenuous activities, such as weightlifting, skiing, and football. You also may need to avoid sports that involve physical contact with other players or a hard ball. Examples of these sports are baseball, soccer, and ice hockey.

Your doctor may suggest some low- and moderate-impact activities, such as swimming, golf, brisk walking, hiking, and tennis.

If you have a child who has Marfan syndrome, talk to his or her doctor about whether your child can participate in physical education at school. Work with your child's doctor and school staff to find out what activities are safe for your child.

The type and level of activity recommended will depend on your how severe your child's Marfan syndrome is.

Pregnancy

Many pregnant women who have Marfan syndrome have safe and normal pregnancies and deliveries. However, pregnant women who have Marfan syndrome have some added risks. The most serious risk is aortic dissection. This risk increases during pregnancy due to extra strain on the heart.

If you're thinking about getting pregnant, talk to an obstetrician (a doctor who cares for pregnant women) who's familiar with your condition. You also may want to talk to a doctor who's an expert in high-risk pregnancies.

Another risk is passing the gene for Marfan syndrome on to your child. If you have Marfan syndrome, you have a 50 percent chance of passing the condition on to each child you have. Even if you pass the gene on, your child's symptoms may be different than your symptoms.

You may want to consult a geneticist, a cardiologist, and an obstetrician before getting pregnant. These doctors can explain the risks to you and your baby and what your options are.