While there is no cure for Marfan syndrome, treatment focuses on preventing the various complications of the disease. In the past, people who had Marfan syndrome rarely lived past 40. With regular monitoring and modern treatment, most people with Marfan syndrome can now expect to live a more normal life span.
Doctors often prescribe blood pressure lowering drugs to help prevent the aorta from enlarging and to reduce the risk of dissection and rupture. The most commonly used drugs are beta blockers, which cause your heart to beat more slowly and with less force. Other blood pressure drugs, such as losartan (Cozaar), also show promise.
A dislocated lens in your eye can be treated effectively with glasses or contact lenses that refract around or through the lens. Surgery to replace the lens also may be an option.
Surgical and other procedures
Depending upon your signs and symptoms, procedures might include:
Feb. 01, 2013
- Aorta repair. If your aorta's diameter enlarges quickly or reaches a dangerous size — usually around 2 inches (5 centimeters) — your doctor may recommend an operation to replace a portion of your aorta with a tube made of synthetic material. This can help prevent a life-threatening rupture. Your aortic valve may need to be replaced as well.
- Scoliosis treatment. For some children and adolescents, doctors recommend a custom-made back brace, which is worn nearly continuously until growth is complete. If the curve in your child's spine is too great, your doctor may suggest surgery to straighten the spine.
- Breastbone corrections. If a sunken breastbone affects your child's breathing, surgery to repair the deformity may be an option, and insurance is likely to cover it. A protruding breastbone usually doesn't cause functional problems, but it may be a cosmetic concern — which may mean your insurance won't cover it.
- Eye surgeries. If parts of your retina have torn or come loose from the back of your eye, surgical repair is usually successful. If you have cataracts, your clouded lens can be replaced with an artificial lens.
- Questions and answers about Marfan syndrome. National Institute of Arthritis and Musculoskeletal and Skin Diseases. http://www.niams.nih.gov/health_info/marfan_syndrome. Accessed Nov. 27, 2012.
- Wright MJ, et al. Genetics, clinical features and diagnosis of Marfan syndrome and related disorders. http://www.uptodate.com/index. Accessed Nov. 27, 2012.
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- Wright MJ, et al. Management of Marfan syndrome and related disorders. http://www.uptodate.com/index. Accessed Nov. 27, 2012.
- AskMayoExpert. Marfan syndrome. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2012.
- Ferri FF. Ferri's Clinical Advisor 2013: 5 Books in 1. Philadelphia, Pa.: Mosby Elsevier; 2012. http://www.mdconsult.com/books/about.do?eid=4-u1.0-B978-0-323-08373-7..00002-9&isbn=978-0-323-08373-7&about=true&uniqId=343863096-23. Accessed Nov. 27, 2012.
- Bowen JM (expert opinion). Mayo Clinic, Rochester, Minn. Jan. 7, 2013.
- Wright MJ, et al. Pregnancy and Marfan syndrome. http://www.uptodate.com/index. Accessed Nov. 29, 2012.
- Fuster V, ed. et al. Hurst's The Heart. 13th ed. New York, N.Y.: The McGraw-Hill Companies; 2011. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=5. Accessed Nov. 29, 2012.
- Goldsmith LA, et al., eds. Fitzpatrick's Dermatology in General Medicine. 8th ed. New York, N.Y.: The McGraw-Hill Companies; 2012. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=740. Accessed Nov. 29, 2012.
- Living with Marfan syndrome: Children and teens. National Marfan Foundation. http://www.marfan.org/marfan/2493/Children-and-Teens. Accessed Nov. 29, 2012.