Pediatric Marfan Program
Marfan syndrome is a genetic disorder that affects the body’s connective tissue—tissue that supports and maintains the shape of the body and ensures that we grow and develop properly. Connective tissue is an important component of the heart, blood vessels, bones, joints, eyes, lungs, skin, and nervous system, all of which can be affected by Marfan syndrome.
Because the symptoms of Marfan syndrome and related connective tissue disorders can worsen over time, it’s important that your child receives an early and accurate diagnosis, and that he or she is cared for by a team of specialists who have experience with these diseases.
Our Approach to Care
There is no cure for Marfan syndrome but with proper management, your child can live a long, full life.
Columbia's Pediatric Marfan Program is dedicated to providing collaborative care for children with Marfan syndrome, Loeys-Dietz syndrome, and other connective tissue disorders. We are recognized as an official pediatric Marfan center by the Marfan Foundation, and we are one of the few comprehensive Marfan centers in the New York area.
Team care is essential to the management of Marfan syndrome because the condition can affect organs and tissue in many places in the body. Our program collaborates with specialists in cardiology, ophthalmology, orthopedics, pulmonology, neurology, and genetics to provide expert, multidisciplinary care for children with Marfan syndrome.
Key to our program is our dedicated program coordinator, who schedules appointments and tests according to each patient's individual care plan. Our coordinator works to provide multiple services in a single visit to minimize stress and travel time.
What to Expect
Your child's care begins with a dedicated cardiologist, who will continue to monitor for complications of the heart and arteries throughout childhood.
At your child's initial appointment our cardiologist will conduct a physical examination and cardiac evaluation, and may refer your child to other specialists in our program for evaluation. Because Marfan is an inherited disorder, we may also recommend genetic counseling to confirm the diagnosis and to give all family members information about the disorders.
Following these evaluations, our team will work with your family to create a treatment plan that addresses your child's specific needs. Most important is lifetime monitoring, because Marfan symptoms change over time. We work closely with the Columbia Marfan Clinic to transition our patients to adult care.
Conditions We Treat
There are a number of connective tissue disorders that are related to Marfan syndrome and that require similar care.
- Marfan syndrome
- Ehlers-Danlos syndrome
- Loeys-Dietz syndrome
- Beals syndrome
- MASS phenotype
- Familial aortic aneurysm
- Shprintzen-Goldberg syndrome
- Stickler syndrome
- Ectopic lentis syndrome
For more information about Marfan syndrome and related connective tissue disorders visit the Marfan Foundation website.