Marfan Syndrome - Living With - Living With

How often you need to see your doctor for follow-up care will depend on your treatment and symptoms.

• Ask your doctor how often to schedule follow-up visits.
• Continue any medicines as prescribed by your doctor, including those to control other medical conditions such as high blood cholesterol and high blood pressure.
• Get regular dental check-ups. People who have Marfan syndrome often have teeth, gum, or jaw problems that require regular care. If your teeth are crowded, you might need braces or more regular cleaning visits to reduce gum inflammation and the risk of an infection of the inner lining of your heart chambers and valves. You will likely need to take antibiotics before dental procedures to help prevent infection.
• Follow your doctor’s recommendations for adopting healthy lifestyle changes, such as heart-healthy eating, being physically active, quitting smoking, managing stress, and aiming for a healthy weight.
• Tell your doctor if your medicines are causing side effects.

Return to Treatment to review possible treatment options for Marfan syndrome.

To monitor your condition, your doctor may recommend the following tests:

• Annual checkups with a bone specialist or orthopedist to look for changes in your spine and breastbone.
• Regular eye exams with an eye specialist or ophthalmologist to find and treat problems early.
• Regular imaging tests to check for problems with your heart valves and measure your aorta.

People who have Marfan syndrome may need more than one heart or blood vessel surgery over time. After surgery, you may need medicines and regular monitoring. Follow all medical instructions given by your doctor. Recovery after open surgery may take months.

To help prevent complications from Marfan syndrome, your doctor may recommend you avoid the following:

• Certain physical activities, such as contact sports, intense physical activity, and weightlifting, that can put strain on the heart or joints or make it more likely for your eye lens to move out of place. Your doctor can suggest ways to get exercise while reducing the risk of problems.
• Certain medicines, such as triptan headache medicines that narrow your blood vessels and decongestant cold medicines that can increase blood pressure and put stress on your blood vessels.
• Breathing against resistance, such as when playing a brass instrument, or positive pressure ventilation, such as when SCUBA diving, if you are at risk of pneumothorax.
• Illegal drugs, such as cocaine or amphetamines, that can strain your heart.

Living with Marfan syndrome may cause fear, anxiety, depression, and stress. Talk about how you feel with your healthcare team. Your doctor may recommend:

• Talking to a professional counselor. If you are depressed, your doctor may also suggest medicines or other treatments that can improve your quality of life.
• Joining a patient support group. You can see how other patients manage similar symptoms and conditions. Talk with your doctor about where to find local support groups or check with an area medical center.
• Seeking support from family and friends, which can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

If you have Marfan syndrome, you are at risk for a life-threatening aortic dissection. If your aorta is weaker or larger than normal, it is important to know the signs and symptoms of a dissection or rupture, which may include:

• Sudden, severe pain in your abdomen, chest, or back. The pain can travel upward or downward.
• Light-headedness
• Paleness
• Rapid heart rate or palpitations

If you have symptoms of aortic dissection or rupture, call 9-1-1.

To prepare for an emergency:

• 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.
• Tell the people you see regularly, such as family, friends, or coworkers, that you are at risk for aortic dissection. Describe the symptoms of this condition, and tell them to call 9-1-1 if you have these symptoms.

Many women who have Marfan syndrome have safe and healthy pregnancies and deliveries. However, there are some added risks during pregnancy and delivery. The most serious risk is aortic dissection due to extra strain on the heart. If you have Marfan syndrome and have already experienced aortic dissection, it is not safe for you to become pregnant.

If you are thinking about getting pregnant, talk with an obstetrician, a doctor who cares for pregnant women, who is familiar with your condition and has experience with high-risk pregnancies. Your doctor might recommend that you have surgery to fix your aorta before you try to get pregnant. Your doctor will also make sure that your medicines are safe to take during pregnancy.