Marfan syndrome

Healthcare/Doctors

How do I find a center of excellence in Marfan syndrome?

Several university hospitals, such as Johns Hopkins Hospital, Stanford's Children Hospital, and Brigham and Women's Hospital offer comprehensive care for individuals with Marfan syndrome and have a multi-specialist approach. You can find about other healthcare providers who are knowledgeable about Marfan syndrome through the Marfan Foundation's website.

References
  • The Marfan Foundation. (2019, September 12). Find a Doctor. Retrieved from http://www.marfan.org/resources/patients/find-doctor.
  • Brigham and Women's Hospital. (n.d.). Marfan Syndrome and Related Disease Clinic. Retrieved from http://www.brighamandwomens.org/Departments_and_Services/medicine/services/cvcenter/genetics/marfan.aspx.
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What specialist doctor should I see with Marfan syndrome?

If I have Marfan syndrome, what should my doctor know about managing my disease?

What specialist doctor should I see with Marfan syndrome?

Individuals with Marfan syndrome should see a geneticist, cardiologist (heart specialist), and ophthalmologist (specialist of eye diseases) to ensure the best possible care for this condition. If an individual has or might have skeletal symptoms, they should also see an orthopedist (a bone, joint, and muscle specialist).

References
If I have Marfan syndrome, what should my doctor know about managing my disease?

Your doctor should be aware of which specialists need to be monitoring your disease. These should always include ongoing evaluations by a cardiologist and an ophthalmologist, and a genetics consultation. Your doctor may also want to consult other specialists, such as an orthopedist and a pulmonologist, depending on your symptoms. If you become pregnant, your doctor should know that you need to be seen by a high-risk obstetrician.

References

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