What is marfan syndrome?

Marfan Syndrome
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Marfan syndrome

Marfan syndrome is an inherited disorder that causes problems in the connective tissues of the blood vessels, heart, and eyes, and affects the muscles, ligaments, bones, and tendons. People with Marfan syndrome tend to be tall and thin with long arms, legs, fingers, and toes.

Marfan syndrome may cause heart or aorta problems, a curved spine, vision trouble, and pain if the nerves are affected. Some people may have mild problems. But others have more serious symptoms.

Treatment for Marfan syndrome includes treating specific problems related to the connective tissue disease, such as heart problems.

How can you care for Marfan syndrome?

  • Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine.
  • Do not smoke. People with Marfan syndrome are already at risk for heart and lung problems. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.
  • Talk to your doctor before starting an exercise program or playing team sports. Contact sports can be dangerous because your blood vessels and joints are weaker than normal.
  • Wear a medical alert bracelet which says that you have Marfan syndrome. You can buy this at most drugstores.
  • Write or type a list of any conditions you have that are related to Marfan syndrome. Also include a list of medicines you take. Keep these lists in several places, including with you in case of an emergency.

Marfan syndrome: When to call

Call 911 anytime you think you may need emergency care. For example, call if:

  • You have severe chest, belly, or back pain.
  • You passed out (lost consciousness).
  • You have symptoms of a heart attack. These may include:
    • Chest pain or pressure, or a strange feeling in the chest.
    • Sweating.
    • Shortness of breath.
    • Nausea or vomiting.
    • Pain, pressure, or a strange feeling in the back, neck, jaw, or upper belly or in one or both shoulders or arms.
    • Lightheadedness or sudden weakness.
    • A fast or irregular heartbeat.
    After you call 911, the operator may tell you to chew 1 adult-strength or 2 to 4 low-dose aspirin. Wait for an ambulance. Do not try to drive yourself.

Call your doctor now or seek immediate medical care if:

  • You have upper back or belly pain.
  • You are coughing or wheezing.
  • You have a hoarse voice.
  • You have a pulsing feeling in your belly or back.

Watch closely for changes in your health, and be sure to contact your doctor if:

  • You have questions about Marfan syndrome.

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