Marfan Syndrome Clinic

What is Marfan syndrome?

Marfan syndrome is a disorder of connective tissue, which is the tissue that strengthens parts of the body and holds it together. Because connective tissue is found throughout the body, Marfan syndrome can affect many areas of the body including the skeleton, heart, eyes, blood vessels, nervous system, skin and lungs. When undiagnosed, the syndrome can lead to significant heart problems – which is why routine heart care at the Marfan Syndrome Clinic is so important in improving the lives of kids with this condition. 

In most cases, Marfan syndrome is inherited, which means it is passed down through families. People with the disorder are usually tall with long limbs and long thin fingers. Other common signs can include a spine that curves to one side (known as scoliosis), a chest that sinks in or sticks out, crowded teeth and/or flat feet. Some people with the condition have many of these traits, while other people only have a few. The earlier Marfan syndrome is identified and treated, the lower the risk of complications. Get more information about Marfan syndrome.

Why choose the Marfan Syndrome Clinic at Children’s  Colorado?

The Marfan Syndrome Clinic at Children’s Hospital Colorado has been deemed the regional referral center for the Rocky Mountain region by the National Marfan Foundation. Our subspecialty clinic, located within our Heart Institute, focuses on the cardiac needs of patients with Marfan syndrome by:

• Using state-of-the-art equipment for heart testing and evaluation
• Monitoring patients and creating a care plan on an individual basis
• Providing guidance on how a heart condition affects the important milestones of adulthood, such as employment, pregnancy and physical activity
• Planning and reviewing the most appropriate treatment options including medicine, surgery and other therapies
• Collaborating with other subspecialties for multidisciplinary care and evaluation including genetics, orthopedics and ophthalmology
• Coordinating follow-up care as kids transition into adulthood

Learn more about our heart care for kids with genetic syndromes like Marfan.

A brighter future for kids with Marfan syndrome

It's now possible for children and adults with Marfan to live longer and enjoy a good quality of life. Although Marfan syndrome has no cure, treatments can help delay or prevent complications. 

Resources for families

For more information about Marfan syndrome, visit the National Marfan Foundation website.

Learn more about your visit to the Heart Institute.