Marfan Syndrome and Related Conditions Program

Marfan Syndrome and Related Conditions Program


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.

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