Marfan Syndrome
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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:
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.
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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