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:

Take your medicine as directed:

Call your primary healthcare provider if you think your medicine is not working as expected. Tell him if you are allergic to any medicine. Keep a current list of the medicines, vitamins, and herbs you take. Include the amounts, and when, how, and why you take them. Take the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency. Throw away old medicine lists.

• 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 for information about where and when to go for follow-up visits:

For continuing care, treatments, or home services, ask for more information.

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 tips:

• Eat a variety of healthy foods: This may help you have more energy and heal faster. Healthy foods include fruit, vegetables, whole-grain breads, low-fat dairy products, beans, lean meat, and fish. Ask if you need to be on a special diet.
  
  
• Drink liquids as directed: Adults should drink between 9 and 13 eight-ounce cups of liquid every day. Ask what amount is best for you. For most people, good liquids to drink are water, juice, and milk.
  
  
• Get plenty of exercise: Talk to your caregiver about the best exercise plan for you. Exercise can decrease your blood pressure and improve your health.
  
  
• Do not smoke: If you smoke, it is never too late to quit. You are more likely to have heart disease, lung disease, cancer, and other health problems if you smoke. Quitting smoking will improve your health and the health of those around you. If you smoke, ask for information about how to stop.
  
  
• Manage stress: Stress may slow healing and cause illness. Learn new ways to relax, such as deep breathing.

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.
  
  
• 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.

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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.

Learn more about Marfan Syndrome (Discharge Care)