This panel discussion led by Gretchen MacCarrick, MC CGC of Johns Hopkins University, and members of the Loeys-Dietz Syndrome Foundation Board, answers common questions about living with and treating LDS.
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From long, flexible limbs to surgery scars, living with the physical markers of Marfan, Loeys-Dietz, and related conditions can weigh on a person's body image. This discussion focuses on body image questions relating to Marfan and Loeys-Dietz but can apply to many conditions presenting with external features.
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Dr. Alan Braverman, Washington University in St. Louis, and Dr. Mary Sheppard, University of Kentucky, provide guidance on physical activity and exercise when you have Marfan, LDS, VEDS, or another genetic aortic or vascular condition. They are joined by three members of our community – Allen Tucker (Marfan), Samantha Stallings (LDS), and Morgan Jozwiak (mom of a young boy with VEDS – who share their first-hand experience.
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This webinar, which is part of our quality of life programming, features dads who have Marfan, Loeys-Dietz, or VEDS and/or have children with one of these conditions. They provide valuable insights into how they handle various situations, make certain decisions, and, like any parent, be the best they can be. These dads assert that you are not your diagnosis.
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What is life like after aortic surgery? Two young adults with Marfan syndrome, Dominga Noe and Victoria Falcone-Pawar, and two young adults with Loeys-Dietz syndrome, Lauren Atherton and Peter Donato, share their experiences. Dr. David Liang, a member of The Marfan Foundation Professional Advisory Board, from Stanford and Hoag, provides the medical perspective.
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