Living with Marfan syndrome

Regular Assessment

Complications can be prevented if patients are seen on a regular basis by their various specialists. Those affected should work closely with physicians for individual care and management. Often your Consultant requires the test results such as X-rays, ECG (Electrocardiogram), Echocardiogram, MRI (Magnetic Resonance Imaging), CT Scan, and lung function tests prior to your appointment. Assessments may need to be increased as the patient grows older.

For more information please read our Growing Older with Marfan Syndrome pamphlet

Fitness

In general, it is important for the patient with Marfan syndrome to keep as fit as possible with gentle regular exercise. This improves muscle tone and is good for overall function of the heart and blood vessels, but any
exercise should be appropriate to each individual’s physical condition. Some activities are best avoided, such as long distance running and heavy lifting.

For more information please read our Exercise Guide: Marfan syndrome.

Activity

The person with Marfan syndrome should in general be able to take part in appropriate non-competitive sporting activities but should be allowed to stop whenever tired. Contact sports such as basketball and rugby are best avoided.

Fatigue:

Due to Marfan syndrome, fatigue can be a problem, especially when long periods of concentration are required. Learn to “pace yourself”, working within your own comfortable time scales.

Diet:

A balanced healthy diet, rich in vitamins and minerals, encourages the production of connective tissue.

Smoking:

Destroys elastin, which is the very protein which is already deficient in anyone who has Marfan syndrome. It also causes complications in surgery and the recovery period. It is therefore best avoided.

Starting a Family

Having children is a very personal decision that should be made solely by prospective parents, but only after acknowledging and understanding the potential risks, especially if the female partner is affected. Pre-pregnancy and genetic counselling should therefore be undertaken before starting a family.

Our Pregnancy in Marfan Syndrome guide has more information on family planning.

← Back to Marfan syndrome