WHAT YOU SHOULD KNOW:
Marfan syndrome is a disorder that weakens the connective tissue in your body. Connective tissue gives strength and support to tendons, ligaments, blood vessels, and other parts of your body. Marfan syndrome may keep many of these parts of your body from being as strong as they should be. This can cause problems in your eyes, heart, blood vessels, and bones.
AFTER YOU LEAVE:
- Beta-blockers: These help your heart beat softer and slower. This may prevent damage to your heart and aorta.
- Take your medicine as directed. Call your healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
Follow up with your healthcare provider as directed:
Write down your questions so you remember to ask them during your visits.
What you should know before you try to have children:
- Genetic counseling: There is a chance that you may pass Marfan syndrome to your child. You can go to caregivers for genetic counseling if you plan to have a baby. This counseling can help you understand your chances of passing the condition to your baby. Ask for more information on genetic counseling.
- Pregnancy: If you are a female, talk to your primary healthcare provider before you get pregnant. He will check your aorta to see if there is any widening. This shows that there is weakness in the wall of the aorta. The aorta is the large blood vessel that carries blood from the heart and lungs to the body. Pregnancy may put a lot of strain on your heart and may worsen your condition. You will need to be monitored very closely during your pregnancy.
For more information:
- National Marfan Foundation
22 Manhasset Avenue
Port Washington , NY 11050
Phone: 1- 516 - 883-8712
Phone: 1- 800 - 862-7326
Web Address: www.marfan.org
Contact your primary healthcare provider 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 care.
Seek care immediately or call 911 if:
- You have severe pain in your chest or abdomen.
- 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.