Marfan Syndrome Clinic

Children and adults with Marfan syndrome and other related connective tissue disorders are provided coordinated care through the Herma Heart Center at Children's Hospital of Wisconsin. The Marfan Syndrome Clinic complements the Adult Congenital Heart Disease Program since most people diagnosed with Marfan syndrome now survive into adulthood.

Over the past 25 years, advances in detection, surveillance and management of these complications has resulted in improved life expectancy in people with Marfan syndrome to near normal. In the past, without proper diagnosis and treatment, people with Marfan syndrome, on average, had their lives shortened by half due to cardiovascular complications.

Marfan syndrome is a genetic disorder that affects many different body systems and requires multidisciplinary care, most often cardiologists, orthopedic surgeons, ophthalmologists and geneticists. Diagnosis can be difficult since other syndromes have similar symptoms and there is great variation in how Marfan affects even related individuals.

This multidisciplinary clinic provides:

• Accurate diagnosis and follow-up including X-rays, echocardiography and cardiac MRI.
• Medical management, including a comprehensive treatment plan, and annually coordinated tests and appointments with specialists.
• A single specialist to oversee care and make referrals as needed.

Specialists include:

Michael Earing, MD, program coordinator and pediatric cardiologist.

Roger Lyon, MD, pediatric orthopedic surgeon.

Mark Ruttum, MD, pediatric ophthalmologist.

David Bick, MD, pediatric geneticist.