In this webinar, three doctors from Cleveland Clinic - Dr. Ken Zahka, Dr. Vidyasagar Kalahasti, and Dr. Eric Roselli - provide guidance for families. They explain why it's important to switch from pediatric to adult doctors and offer data as well as real-life suggestions for making this transition easier.
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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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In this webinar, parents can learn some of the basic medical information related to Marfan and Loeys-Dietz, especially as it related to the heart and blood vessels. In addition, we addressed issues that are non-medical, including learning issues and psychosocial challenges.
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People in the Marfan, LDS, VEDS, and related conditions community want to know about securing life insurance. In this webinar, we feature an expert who can answer your questions about securing life insurance when you have a connective tissue condition.
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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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Susan Leshen, LCSW, leads a session that teaches you how to practice mindfulness. For more information, please contact Susan at sleshen@marfan.org.
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