With the recent opening of the Vanderbilt Marfan Syndrome and Aortic Disorders Center, the state's only comprehensive clinic serving entire families, hundreds of patients with connective tissue disorders now have a one-stop shop for health care.
Marfan syndrome is a genetic disorder that affects the body's connective tissue. The disorder can impact the heart, blood vessels, bones, joints and eyes. Problems with the heart and vascular system are common in Marfan patients.
Located within the Vanderbilt Heart and Vascular Institute, the center offers a multidisciplinary approach to caring for patients with aortic disease, with an added focus on Marfan syndrome.
"We have been treating this group of patients for years," said Clayton Kaiser, M.D., assistant professor of Cardiac Surgery and co-surgical director of the new center. "But we had never put together a real center working with the Marfan Foundation to create a multidisciplinary operation. Our team is able to provide comprehensive care that offers entire families the opportunity to receive world-class care in one place. This is an entirely new concept in Tennessee."
Specialists from Cardiology, Cardiac Surgery, Vascular Medicine, Vascular Surgery, Anesthesiology, Radiology and Radiological Sciences, Genetics, congenital disease programs, Orthopaedics, Ophthalmology, Neurosurgery and pain management collaborate to provide state-of-the-art diagnostic testing, genetic screenings, innovative therapies for medical and surgical management as well as ongoing research and education.
The aorta is a typical area of focus in Marfan patients, Kaiser said. Patients can experience aortic dilation (enlarged aorta or aortic aneurysm), or aortic dissection (the aorta tears or ruptures) that can require both medical and surgical attention.
"It is so important that patients be followed and families impacted also be screened," said Kaiser. "If left unchecked or untreated, the risk of valvular insufficiency or dysfunction as well as rupturing and dissection can lead to sudden cardiac death.
"We are able to offer the most cutting-edge surgical techniques to replace aortic aneurysms. Our highly skilled team has the training and tools to provide our patients with individualized, top-notch care and monitoring."
Statistics show that 1 in 5,000 people have Marfan syndrome. Kaiser estimates that there are thousands in the greater Nashville, Tennessee, area.
"The hardest part of aortic disease is that it generally is silent," said Kaiser. "There is no real sign or symptom. We follow patients from birth to 70-plus years old.
"We see a wide array of connective tissue and aorta-related disorders. And now that we are associated with the Marfan Foundation, we will have a larger visibility among patients."
Josh Beckman, M.D., director of Vanderbilt's Section of Vascular Medicine within the Division of Cardiovascular Medicine and medical director of the new center, will provide the next generation of care for this population of patients.
"The advent of a comprehensive Marfan and Aortic Disease Center will permit the co-localization of experts in the care of patients and their families," Beckman said.
"These conditions require vigilance and dedication while benefiting from a supportive environment that is forward thinking, compassionate and comprehensive."
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