Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Marfan Syndrome

This study tests an Adapted Physical Activity (APA) program for children and teenagers aged 7 to 17 with Marfan Syndrome — a genetic connective tissue disorder affecting the heart, blood vessels, eyes, and skeleton. People with Marfan often have a dilated (enlarged) aorta, which puts them at risk for life-threatening aortic dissection. As a result, they are typically restricted from sports and vigorous exercise, leaving many children deconditioned, isolated, and with poor quality of life. The APA program is specially designed to provide safe, beneficial physical activity tailored to their cardiovascular constraints. Children aged 7 to 17 with genetically confirmed Marfan syndrome or a related connective tissue disorder, with written parental consent, are eligible. Those with severe aortic dilation (aortic diameter greater than 45 mm), significantly reduced heart function (ejection fraction below 45%), severe mitral valve leakage, or pregnancy are excluded for safety reasons. Children with Marfan syndrome often grow up being told what they cannot do physically, which can have lasting psychological and physical consequences including weight gain, depression, and social isolation. Demonstrating that a carefully adapted exercise program can safely improve fitness and wellbeing in this population could transform care guidelines and give Marfan patients — especially children at a formative stage of development — the freedom to participate meaningfully in physical activity.