Marfan Syndrome

WHAT YOU SHOULD KNOW:

• Marfan syndrome is a disorder that weakens the connective tissue and cause problems in the eyes, heart, and bones. The connective tissue provides strength and support to tendons, ligaments, blood vessels, and many other structures in the body. With Marfan syndrome, many of these structures are not as strong as they should be. Blood vessels may get damaged easily and other body parts may have defects (problems). Marfan syndrome is caused by an abnormal gene that causes your connective tissue to become weak. Genes are little pieces of information that tells your body what to do or what to make. People with Marfan syndrome are usually tall and thin, with long arms and legs, a long face, and a small chin. With Marfan syndrome, you may have trouble seeing and breathing, an abnormal heartbeat, and abnormal bones in your body.
  
  
• You may need blood tests, a computerized tomography (CT) scan, an magnetic resonance imaging (MRI), an electrocardiograph, and x-rays to diagnose Marfan syndrome. Treatment is given to prevent further damage to body areas affected by Marfan syndrome. Treatment may also correct problems caused by Marfan syndrome. You may be given medicines to help your heart beat correctly. You may need surgery to repair damaged areas of your heart and eyes, or straighten your backbone. You may also need to change your lifestyle to avoid activities that may strain your heart. Diagnosing and treating Marfan syndrome as soon as possible may relieve symptoms such as loss of movement and pain. Treating Marfan syndrome may also help you live longer.

AFTER YOU LEAVE:

Medicines:

• Keep a written list of the medicines you take, the amounts, and when and why you take them. Bring the list of your medicines or the pill bottles when you see your caregivers. Learn why you take each medicine. Ask your caregiver for information about your medicine. Do not use any medicines, over-the-counter drugs, vitamins, herbs, or food supplements without first talking to caregivers.
  
  
• Always take your medicine as directed by caregivers. Call your caregiver if you think your medicines are not helping or if you feel you are having side effects. Do not quit taking your medicines until you discuss it with your caregiver. If you are taking medicine that makes you drowsy, do not drive or use heavy equipment.

• Beta blockers: These medicines may help your heart beat softer and slower. Having a slower and softer heartbeat may prevent damage to your heart and aorta.
  
  

Ask your caregiver when to return for a follow-up visit. Keep all appointments. Write down any questions you may have. This way you will remember to ask these questions during your next visit.

Genetic counseling: If you plan to have a baby, there is a chance that you may pass Marfan syndrome to him. If you are female, pregnancy may put a lot of strain on the heart and may worsen your condition. Ask your caregiver for more information on genetic counseling.

Wellness hints:

• Eating and drinking:
  
  
  • Eat a variety of healthy foods such as fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meat and fish. Eating healthy foods may help you have more energy and heal faster. Ask your caregiver if you need to be on a special diet.
    
    
  • Men 19 years old and older should drink about 3.0 Liters of liquid each day (close to 13 eight-ounce cups). Women 19 years old and older should drink about 2.2 Liters of liquid each day (close to 9 eight-ounce cups). Follow your caregiver's advice if you must change the amount of liquid you drink. For most people, good liquids to drink are water, juices, and milk. If you are used to drinking liquids that contain caffeine, such as coffee, these can also be counted in your daily liquid amount. Try to drink enough liquid each day, and not just when you feel thirsty.
  
  
• Start exercising: Talk to your caregiver before you start exercising. Together you can plan the best exercise program for you. It is best to start slowly and do more as you get stronger. Exercising can help make your heart stronger, lower your blood pressure, and keep you healthy.
  
  
• Quit smoking: It is never too late to quit smoking. Smoking harms the heart, lungs, and the blood. You are more likely to have a heart attack, lung disease, and cancer if you smoke. You will help yourself and those around you by not smoking. Ask your caregiver for more information about how to stop smoking if you are having trouble quitting.
  
  
• Avoid stress: Stress may slow healing and cause illness. Since it is hard to avoid stress, learn to control it. Learn new ways to relax, such as deep breathing. Talk to your caregiver about things that upset you.

For more information: Marfan syndrome is a life-changing disease for you and your family. Accepting that you have Marfan syndrome is hard. You and those close to you may feel angry, sad, or frightened. These feelings are normal. Talk to your caregivers, family, or friends about your feelings. You may also want to join a support group with other people who have Marfan syndrome. Contact the following for more information:

• American Heart Association National Center
  7272 Greenville Avenue
  Dallas, TX 75231-4596
  Phone: 1-800-242-8721
  Web Address: http://www.americanheart.org
  

• National Eye Institute
  2020 Vision Pl.
  Bethesda, MD 20892-3655
  Phone: 1-301-496-5248
  Web Address: http://www.nei.nih.gov
  

CONTACT A CAREGIVER IF:

• You have a fever (increased body temperature).
  
  
• You are planning to have a child or you are pregnant.
  
  
• You have pain in your hips and have problems walking.
  
  
• You cannot make it to your next appointment.
  
  
• You have questions or concerns about your condition or medicine.

SEEK CARE IMMEDIATELY IF:

• You have very bad pain in your chest or abdomen (stomach).
  
  
• You have sudden pain in your eyes and trouble seeing.
  
  
• You have sudden trouble breathing.
  
  
• You cannot control your urine or bowel movements.

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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