Marfan Syndrome

Alternate Names : Neonatal Marfan Syndrome, Congenital Marfan Syndrome, Infantile Marfan Syndrome

What are the treatments for the disease?

Treatment of Marfan syndrome is aimed at preventing complications. Heart medicines, such as beta-blockers, may be used to reduce the stress on the heart valves and blood vessels. If the valves have been damaged, antibiotics may be needed at times to prevent a life-threatening infection of the heart valve. Valve replacement surgery may be needed. Eye surgery is sometimes done to correct some of the damage to the lens or the retina of the eye. This may help to prevent blindness. Bracing or surgery may be needed to correct a curvature of the spine. Hormone therapy may be used to keep young girls from becoming too tall. Physical therapy may help improve muscle tone, especially in infants and children who have this syndrome.

What are the side effects of the treatments?

Beta-blockers can cause side effects including tiredness, dizziness, and sexual side effects but these are not common in most people. They may also cause breathing problems in people who have asthma.

Antibiotics can cause stomach upset or allergic reactions in some people.

Surgical risks should be discussed with the surgeon or ophthalmologist, but any risks are usually outweighed by the benefits of the treatment.

Hormone therapy has side effects such as headaches and blood clots.

What happens after treatment for the disease?

Patients with Marfan syndrome need to be followed closely by their doctors to prevent complications from occurring.

How is the disease monitored?

Echocardiograms will need to be done frequently to check the heart and its valves. An ophthalmologist will need to check the eyes on a regular basis to prevent vision problems. As a child with Marfan syndrome grows, the spine will have to be checked for a curvature at least twice a year. Women with Marfan syndrome who become pregnant will have to be monitored closely as a "high-risk" pregnancy. Any new or worsening symptoms should always be reported to the doctor.