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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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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This panel presentation digs into practical ways you can get the most out of your doctor visits. This discussion looks at what you can prepare ahead of time and ways you can advocate for yourself during a visit, among other steps you can take to make sure you get the most out of each visit.
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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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