By Matthew Thomas Lisi, MD, Cardiovascular Genetics Clinic, Wake Forest Baptist Health
Until now, local families dealing with a cardiovascular-related genetic disorders like Marfan syndrome, hypertrophic cardiomyopathy or Loeys-Dietz syndrome were often left to navigate the medical system with no cohesive coordination of care. It’s also likely they encountered providers who did not focus on genetic cardiovascular conditions. Now, however, we have the Cardiovascular Genetics Clinic at Wake Forest Baptist Health/Brenner Children’s Hospital. This unique resource allows children and adults with cardiovascular genetic disorders to receive all-inclusive, preeminent care right here in their backyard. This multidisciplinary clinic is one of only a few in the Southeast.
I often refer to the Cardiovascular Genetics Clinic as a “one-stop shop” because it provides people dealing with cardiovascular genetic disorders the diagnostic evaluation, care coordination, treatment and genetic testing they need all in one place.
Traditionally, patients have had to receive evaluation by a medical geneticist with genetic counseling and genetic testing one place, and cardiac imaging and treatment elsewhere. As a result, they may have been forced to wait months to see each specialist, and then had to rely on multiple providers to communicate with one another in order to determine the correct diagnosis, necessary testing and appropriate treatment options.
At the Cardiovascular Genetics Clinic, we do it all so that patients don’t have to deal with the confusion and inconvenience of multiple visits and providers. When patients come to our clinic, I perform a complete systemic exam, cardiovascular exam, as well as an echocardiogram (Echo) and electrocardiogram (EKG). In addition, I work side by side with an experience and dedicated genetic counselor, Peggy Berry, CGC, and together we guide families through the complex and confusing world of genetic testing and counseling. Essentially, patients get the equivalent of multiple visits with multiple providers in one visit under one roof. This offers patients several advantages:
- A focus on the entire disease process—Because of my unique training in cardiovascular genetic disorders, I perform testing and exams with an eye toward cardiac defects. I’m going to have more awareness of those issues than a pure geneticist or regular cardiologist. So when I perform imaging, for example, I’m looking specifically for things that my systemic evaluation is telling me is going on.
- Preeminent care that’s local—We’re the patient’s only resource in the area where they can have everything done in one place in terms of specialized testing and coordination of care. This is a valuable resource that isn’t found in many regions—it is even relatively rare on a nationwide level.
- A resource for the whole family—Genetic conditions often affect multiple members of a family. We offer both pediatric and adult care, and provide a place where all members of the family can receive comprehensive testing, imaging and disease management.
The Conditions We Focus On
When it comes to genetic conditions related to cardiovascular disorders there are multiple types that have distinct features and cardiac risks. One important group, often referred to as “aortopathies,” feature risk for aneurysm and even rupture of the aorta, which is the major blood vessels leaving the heart. These are life-threatening conditions that can be treated effectively. The most well known aortopathy is Marfan syndrome, but there are many others such as Loeys-Dietz syndrome. We also treat multiple other conditions, such as hypertrophic cardiomyopathy, which is a genetic condition that is a leading cause of sudden death in young athletes.
If you suspect your child suffers from one of these conditions, or if one of them runs in your family, visit us at the Cardiovascular Genetics Clinic to get the answers you need. Make an appointment with us by calling 336-716-WAKE.
* Sponsored by Wake Forest Baptist Health