What Treatment Options Are Available

There is no cure for Marfan syndrome. To develop one, scientists may have to identify and change the specific gene responsible for the disorder before birth. However, a range of treatment options can minimize and sometimes prevent complications.

The appropriate specialists will develop an individualized treatment program; the approach the doctor uses depends on which systems have been affected.

• Skeletal--Annual evaluations are important to detect any changes in the spine or sternum. This is particularly important in times of rapid growth, such as adolescence. A serious deformity can not only be disfiguring but can also prevent the heart and lungs from functioning properly. In some cases, an orthopaedic brace or surgery may be recommended to limit damage and disfigurement.

• Eyes--Early, regular eye examinations are key to catching and correcting any vision problems associated with Marfan syndrome. In most cases, eyeglasses or contact lenses can correct the problem, although surgery may be necessary in some cases.

• Heart and blood vessels--Regular checkups and echocardiograms help the doctor evaluate the size of the aorta and the way the heart is working. The earlier a potential problem is identified and treated, the lower the risk of life-threatening complications. Those with heart problems are encouraged to wear a medical alert bracelet and to go to the emergency room if they experience chest, back, or abdominal pain. Some heart valve problems can be managed with drugs such as beta-blockers, which may help decrease stress on the aorta. In other cases, surgery to replace a valve or repair the aorta may be necessary. Surgery should be performed before the aorta reaches a size that puts it at high risk for tear or rupture. Following heart surgery, extreme care must be followed to prevent endocarditic (inflammation of the lining of the heart cavity and valves). Dentists should be alerted to this risk; they are likely to recommend that the patient be prescribed protective medicines before they perform dental work.

• Nervous system--If dural ectasia (swelling of the covering of the spinal cord) develops, medication may help minimize any associated pain.

• Lungs--It is especially important that people with Marfan syndrome not smoke, as they are already at increased risk for lung damage. Any problems with breathing during sleep should be assessed by a doctor.
Pregnancy poses a particular concern due to the stress on the body, particularly the heart. A pregnancy should be undertaken only under conditions specified by obstetricians and other specialists familiar with Marfan syndrome and be followed as a high-risk condition.
While eating a balanced diet is important for maintaining a healthy lifestyle, no vitamin or dietary supplement has been shown to help slow, cure, or prevent Marfan syndrome.

What Are Some of the Emotional and Psychological Effects of Marfan Syndrome?

Being diagnosed and learning to live with a genetic disorder can cause social, emotional, and financial stress. It often requires a great deal of adjustment in outlook and lifestyle. A person who is an adult when Marfan syndrome is diagnosed may feel angry or afraid. There may also be concerns about passing the disorder to future generations or about its physical, emotional, and financial implications.

The parents and siblings of a child diagnosed with Marfan syndrome may feel sadness, anger, and guilt. It is important for parents to know that nothing that they did caused the fibrillin gene to mutate. Parents may be concerned about the genetic implications for siblings or have questions about the risk to future children. Some children with Marfan syndrome are advised to restrict their activities. This may require a lifestyle adjustment that may be hard for a child to understand or accept.

For both children and adults, appropriate medical care, accurate information, and social support are key to living with the disease. Genetic counselling may also be helpful in understanding the disease and its potential impact on future generations

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