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Marfan Syndrome and Related Conditions Program

In This Video

  • Patients with connective tissue disorders like Marfan syndrome and Loeys-Dietz syndrome have problems with other organ systems in addition to aortic disease
  • New discoveries and improvements in patient care result in better long-term survival rates for patients
  • In Loeys-Dietz syndrome, connective tissue protein mutations can predict the severity of future aortic problems
  • As these mutations become more understood, surgeons at Massachusetts General Hospital will be able to tailor aortic operations to the individual patient's likelihood of future aortic disease

In this video, Duke Cameron, MD, co-director of the Marfan Syndrome and Related Conditions Program and the Thoracic Aortic Center at Massachusetts General Hospital, discusses the multidisciplinary care required by patients with aortic disease caused by connective tissue disorders. He also describes promising new research that will allow surgeons to customize operations for patients based on the specific mutations of their tissue proteins.


I'm particularly excited to be part of the Mass General Marfan Syndrome and Related Conditions Clinic. Patients who have connective tissue disorders have more than just aortic problems. They have other problems and other organ systems, and it takes a large team of specialists to be able to address and meet all the needs of these patients.

There are very few centers in the world that offer the breadth of experience and expertise that Mass General can bring to the care of patients with connective tissue disorders. We feel that the combined experience of our team, which is not just the surgeons but the anesthesiologists, the people who run the heart/lung machine, the nurses. These are remarkable people who bring all of their experience to the health and safety of our patients. There are very few centers in this country that have the combined experience in aortic disease and, in particular, aortic root disease and valve-sparing aortic root replacement.

There are a number of new discoveries and refinements and improvements in the care of these patients, in the operating room outside the operating room, that I think are offering better long-term prognosis for our patients. For one, in some of these connective tissue disorders like Loeys-Dietz syndrome, we're recognizing now that specific mutations of connective tissue proteins will actually predict the behavior of the aorta. And that some patients with particular mutations need a more aggressive operation and replacement of more of the aorta at the time of surgery.

As we learn more about these mutations, we will be able to tailor-make an operation for a particular patient based on the likely behavior of his or her aorta over time. This is precision medicine. This is tailoring the treatment to the patient rather than the other way around.

Learn more about the Marfans Syndrome and Related Conditions Program

Refer a patient to the Corrigan Minehan Heart Center

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The Marfan Syndrome and Related Conditions Program at Massachusetts General Hospital delivers comprehensive, lifetime care, including valve-sparing aortic root replacements, to increase life expectancy in patients with Marfan syndrome