Marfan Blog Symptoms: Tall, thin stature ~ Long fingers ~ Unusually long arms and legs ~
Curvature of the spine Chest bone that curves inward or outward ~ Flat feet or high arches ~ Nearsightedness Weakening of the connective tissue, most dangerously of the aorta
Blogging things of interest to those
of us with the Marfan syndrome, by Jeanette Navia
Posted
8:40 PM Eulorhytmics not backing down from any challenge: "Keys, who has Marfan syndrome, a genetic disorder that affects the connective tissue, was in hospital recovering from heart surgery when Adad first came to see him. 'One of his valves went,' Adad remembers. But immediately, the two began to talk about music. An incurable disorder, Marfan syndrome continues to impact Keys. 'Since I've known him, my man is in the hospital at least once a year,' Adad says. But while his condition keeps Keys from doing some things, the pair looks at their music as something that transcends the disorder. 'The syndrome doesn't impact the genius that's in his head,' Adad says."
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Posted
6:49 AM A son is lost; another is saved: "'I don't want to say that Tony sacrificed his life for mine,' he said as he sat gingerly in a chair, the top end of his incision showing above the edge of his hospital gown. 'But I'm glad we know now.'"
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Friday, January 23, 2004
Posted
7:12 PM Daily News - Disease theory outlined in beauty queen trial: "A trial in the Ladysmith Regional Court, which many thought was about a Ladysmith beauty queen allegedly driving over her boyfriend, causing his death, was turned on its head yesterday when the defence suggested before court that Shane Dolph Fouracres may have already been dead due to Marfan's Syndrome when the car made contact with him."
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Friday, January 16, 2004
Posted
11:58 PM The National Marfan Foundation Education and Research Center Grandng: "The new NMF center is a non-profit organization, funded by donations, that is dedicated to providing lifesaving programs and services. Increased public awareness will play a major part in saving lives. To obtain additional information about the NMF and Marfan syndrome, please call the NMF at: 800-8-MARFAN or visit online at www.marfan.org."
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Monday, January 12, 2004
Posted
10:36 PM Wake Forest University Baptist Medical Center: Neal Kon, M.D., professor and chairman of the Department of Cardiothoracic Surgery at Wake Forest University Baptist Medical Center will perform a total aortic root replacement using the Freestyle® stentless porcine aortic root bioprosthesis live on the Internet January 13 at noonThanks, John!
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Posted
12:04 AM Karen Murray - Member, Board of Directors, American Heart Association, National Marfan Foundation: "As president of Liz Claiborne Menswear Brands, Karen Murray has been the driving force behind the growth and success of the company, elevating it to one of the premiere men's sportswear businesses today. In addition to Claiborne's sportswear collection, Karen is also responsible for the DKNY Mens Jeans, Axcess, Crazy Horse Men's and Enyce product lines."
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