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.

INSTRUCTIONS:

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.

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 (Aftercare Instructions)