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Preparing for your appointment
By Mayo Clinic staffMarfan syndrome can affect many different parts of your body, so you may need to see a variety of medical specialists, such as:
- A cardiologist, a doctor who specializes in heart disorders
- An ophthalmologist, a doctor who specializes in eye disorders
- An orthopedist, a doctor who specializes in bones
- A geneticist, a doctor who specializes in genetic disorders
Appointments can be brief. To make the best use of the limited time, plan ahead and have important information available, including:
- Detailed descriptions of all your symptoms
- Details of your past medical history, including any previous surgical reports
- A list of all your medications and dosages, including nonprescription drugs and supplements
- Questions for the doctor, such as what tests or treatments he or she may recommend
What to expect from your doctor
The examinations will vary depending on the type of specialist you're seeing. For example, a cardiologist will listen carefully to your heart while an ophthalmologist may dilate your pupils to check the insides of your eyes. All your doctors will want to hear about your specific symptoms, and whether anyone in your family has had Marfan syndrome or experienced an early, unexplained heart-related death.
- Questions and Answers about Marfan Syndrome. National Institute of Arthritis and Musculoskeletal and Skin Diseases. http://www.niams.nih.gov/health_info/marfan_syndrome/default.asp. Accessed June 1, 2010.
- Wright MJ. The Marfan syndrome. http://www.uptodate.com/home/index.html. Accessed June 1, 2010.
- Hiratzka LF, et al. 2010 ACCF/AHA/AATS/ACR/ASA/SCA/SCAI/SIR/STS/SVM guidelines for the diagnosis and management of patients with thoracic aortic disease: Executive summary. Journal of the American College of Cardiology. 2010;55:e27. Accessed June 1, 2010.
- Keane MG, et al. Medical Management of Marfan Syndrome. Circulation. 2008;117:2802.
- Pyeritz RE. Marfan syndrome: 30 years of research equals 30 years of additional life expectancy. Heart. 2009;95:173.
- Children and teens. National Marfan Foundation. http://www.marfan.org/marfan/2493/Children-and-Teens. Accessed June 1, 2010.
- Glaucoma: What you should know. National Eye Institute. http://www.nei.nih.gov/health/glaucoma/glaucoma_facts.asp. Accessed June 1, 2010.
- Facts about retinal detachment. National Eye Institute. http://www.nei.nih.gov/health/retinaldetach/retinaldetach.asp. Accessed June 1, 2010.
- Grogan M (expert opinion). Mayo Clinic, Rochester, Minn. June 4, 2010.
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