Connect Issues Winter 2022

WITH A MULTI- DISCIPLINARY CLINIC Q A &

The optimal care for someone with a complex, multi- system condition like Marfan, Loeys-Dietz, or VEDS is a coordinated clinic that has expertise and extensive experience treating people with these conditions. We visited with Dr. Glen Iannucci, Director, Aorta and Vascular Program, and Assistant Professor of Pediatrics at Children’s Heart Center at Children’s Healthcare of Atlanta (CHOA), to get more insights into one of the institutions in our directory, how they serve a ff ected individuals and families, and how they work with the Foundation. CHOA, which has had a Marfan and related conditions clinic since 2012, has had more than 5,000 patient visits since then. u Why is it important for people with Marfan, LDS, and VEDS to go to a multi-disciplinary clinic? People with these conditions need care from a variety of providers, and having one central location for medical management is vital. Our clinic has pediatric cardiologists, genetic counselors, and nurse practitioners who specialize in these conditions; we also are well connected within the medical community of providers (orthopedics, ophthalmology, nutritionists) who are familiar with these conditions and can help provide comprehensive care. u Why is it so important for people to see doctors who are experienced with these conditions? Doctors with experience in these conditions not only know how to care for what patients have, but also know what to be on the lookout for as patients grow and develop. They are well versed in the most up-to-date research regarding these disorders and can provide comprehensive, thoughtful care. u If someone does not live near a clinic like yours, would it be helpful to go once a year and then get other care locally? Do you ever do virtual clinic visits? It is important to go to a comprehensive clinic annually to get all questions and concerns addressed as well as potential referrals for other subspecialists arranged. We also want to ensure that patients are receiving up-to-date medical management and that screening is arranged for all possible complications before they become an issue. Care can be arranged locally after these areas have been addressed. We do o ff er telemedicine visits with physicians and genetic counselors outside of annual cardiology screening. u How does CHOA partner with The Marfan Foundation and why is that important to you? We partner with the Foundation to provide support to our patients and families a ff ected by these

p (L-R) Glen Iannucci, MD, Erin Demo, MS CGC, Leslie Bishop, NP, and Denver Sallee III, MD

conditions. The Marfan Foundation is a crucial element in the comprehensive care of patients because of the support it provides. At CHOA, we participate in annual fundraising events, sponsor the Foundation’s Walk for Victory in Atlanta, and hosted the Foundation's Annual Conference. We have also hosted regional symposiums on Marfan and related conditions here and are planning another one for Fall 2022. We do all of this because we want patients and families to know that they are part of a larger community. The Marfan Foundation has really served to unite the patients and medical community and fostered a relationship where we are all working together to advance care. Nowhere is this more apparent than at the annual conference. u Can you tell us about one of your most memorable Marfan clinic visits? One of our most significant days was when we had an established patient, who didn’t know she was pregnant, deliver a baby (thankfully not in our clinic!) and then later came to the clinic for her and the baby’s care. The baby was a ff ected, and the mother’s aorta had grown during pregnancy. It was a humbling experience for all involved. Connect with Dr. Iannucci and his colleagues at the Atlanta Walk for Victory on March 26, 2022. Find a clinic near you on our website.

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Winter 2022