Marfan Syndrome: Care Instructions

Overview

Marfan syndrome causes problems with connective tissues. These tissues include skin, muscles, blood vessels, ligaments, bones, and tendons. They join parts of the body and help hold the body together. Marfan syndrome is caused by a flaw in a gene that helps make connective tissue. The condition is often passed down in families. If someone in the family has Marfan syndrome, their close relatives may need to be examined by a doctor who is familiar with it.

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, while others have more serious symptoms. Most people with Marfan syndrome tend to be tall and thin with long arms, legs, fingers, and toes. They usually have loose joints.

Heart and blood vessel problems are among the most serious effects of Marfan syndrome. The heart's valves may leak. Part of the aorta may become weak and stretch, forming an aneurysm. The aorta carries blood to the upper and lower body. An aneurysm may cause the aorta to tear. A torn aorta is the most common cause of death in people with Marfan syndrome.

Doctors usually can treat the problems caused by Marfan syndrome. For example, you may take medicine to lower your heart rate and blood pressure, which reduces stress on the aorta. Meeting with a genetic doctor or counselor can help you learn more about Marfan syndrome and what it means to your family.

How can you care for yourself at home?

• 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.