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Living With Marfan Syndrome

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

Ongoing Care

If you have Marfan syndrome, 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. (The aorta is the main blood vessel that supplies oxygen-rich blood to the body.) You'll 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 of surgery, you're at increased risk for endocarditis. This is an infection of the inner lining of your heart chambers and valves.

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

Take all of 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. 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. The pain can travel upward or downward. If you have symptoms of 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 Issues and Support

Living with Marfan syndrome may cause fear, anxiety, depression, and stress. Talk about how you feel with your health care team. Talking to a professional counselor also can help. If you're very depressed, your doctor may recommend medicines or other treatments that can improve your quality of life.

Joining a patient support group may help you adjust to living with Marfan syndrome. You can see how other people who have the condition have coped with it. Talk with your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

Smoking

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

For more information about quitting smoking, go to the Health Topics Smoking and Your Heart article and the National Heart, Lung, and Blood Institute's "Your Guide to a Healthy Heart."

Physical Activity

Physical activity can help you feel better, manage your weight, and protect your bones. Talk with 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'll 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 low- and moderate-impact activities, such as swimming, golf, brisk walking, hiking, and tennis.

If you have a child who has Marfan syndrome, talk with his or her doctor about whether your child can take part 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 the severity of your child's Marfan syndrome.

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 with an obstetrician (a doctor who cares for pregnant women) who's familiar with your condition. You also may want to talk with 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 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 tell you the risks to you and your baby and explain your options.

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Marfan Syndrome Clinical Trials

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Marfan Syndrome, visit www.clinicaltrials.gov.

 
October 01, 2010 Last Updated Icon

The NHLBI updates Health Topics articles on a biennial cycle based on a thorough review of research findings and new literature. The articles also are updated as needed if important new research is published. The date on each Health Topics article reflects when the content was originally posted or last revised.