Connective Issues Spring/Summer 2026

New Exercise and Physical Activity Resource: A More Balanced Approach

For many people living with Marfan, Loeys-Dietz, or Vascular Ehlers Danlos syndromes (VEDS)—and oftentimes their healthcare teams—physical activity has long been approached with uncertainty, often shaped by caution and, at times, fear. A new resource created by medical leaders in the field for the Marfan Foundation is helping to reframe that conversation, offering a more balanced and individualized approach to staying active. At its core, the message is clear: movement matters. Physical activity supports not only cardiovascular health, but also emotional well-being, independence, and overall quality of life. And with the right guidance, most people can safely incorporate movement into their daily routines. “The updated recommendations reflect a more nuanced and individualized approach to physical activity,” said Dr. Alan Braverman, a member of the Foundation’s Professional Advisory Board, who helped develop the resource. “Rather than applying broad restrictions, recommendations take into account factors such as the specific diagnosis, age, level of activity, and personal goals.”

The New Resource Highlights: • Importance of Exercise and Physical Activity • Shared Decision-Making • Physical Activity in Children • Physical Activity in Adults • Condition-Specific Information • Medications & Physical Activity • Lifestyle Factors That Affect Exercise • When a Genetic Aortic or Vascular Condition is Suspected but Not Confirmed • References & Additional Resources • Types of Exercise • Rate of Perceived Exertion (RPE) Scale • Adaptive Physical Activity

This marks an important shift from earlier approaches, which often emphasized general limitations. While safety remains central, the new resource recognizes that there is no one size-fits-all answer. Instead, it encourages shared decision-making between individuals, families, and healthcare professionals to determine what is both safe and meaningful. That shift is especially important for families,

according to Dr. Josephine Grima, the Foundation’s chief science officer. “There has been a sense that exercise is unsafe or should be avoided,” she said. “This information now explains how safe and age-appropriate exercise is good for overall health, healthy competition, and inclusion for children.” The resource was developed by a multidisciplinary group of experts in cardiology, pediatrics, and sports medicine, drawing on the latest scientific statements and clinical experience. It also reflects a growing understanding that the benefits of physical activity extend well beyond physical health. For children, that includes the ability to participate in play, sports, and social activities alongside their peers. For adults, it means maintaining strength, mobility, and confidence over time. Across all ages, the emphasis is on finding sustainable ways to stay active without unnecessary restriction. Importantly, the resource also highlights differences between conditions. While there are shared principles, factors such as vascular fragility in VEDS or cervical spine considerations in Loeys-Dietz may influence how activity is approached. This reinforces the need for individualized planning. “Physical activity is important at every age. It supports physical health, emotional well-being, and overall quality of life,” Dr. Braverman said. “With appropriate guidance and individualized planning, most people…can safely incorporate movement and exercise into their daily lives.” Ultimately, the new resource reflects a more empowering perspective, one that prioritizes safety while also recognizing the importance of living fully. *Always consult with your healthcare provider/team prior to starting a new exercise or changing your exercise routine.

Scan the QR code to read the new exercise and physical activity resource or download at Marfan.org/PhysicalActivity

If you have questions about physical activity, contact your healthcare team or reach out to the Foundation’s Help & Resource Center at Marfan.org/ask .

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