Proper Care and Management for Individuals with Marfan Syndrome Necessitates a Multidisciplinary Approach

Marfan syndrome is a heritable connective tissue disorder that affects many different organ systems. In some cases, indications of Marfan syndrome can be recognized at birth, but the majority will have manifestations later in life. A clinical report published in the April 2023 issue of Pediatrics (published online March 20) offers guidance for clinicians in rendering pediatric care. “Health Supervision for Children and Adolescents With Marfan Syndrome” notes that individuals will be affected differently. The main commonality for those with Marfan syndrome is the significant impact it has on daily activities and perceived quality of life. A timely diagnosis coupled with proper multidisciplinary management can have positive effects. Routine depression screening, especially in adolescence, may help identify individuals who need more support or intervention. Additionally, many of those affected by Marfan syndrome benefit from networking and peer relationships. Equally important is the presence of a medical home that serves as an essential framework in the care of children and adolescents with special health care needs. The medical home provides care coordination among the medical specialties providing optimal and efficient health care for the patient and family. The AAP website for parents, HealthyChildren.org, offers information on Marfan Syndrome here.

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The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.