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
5:53 PM TCU INSIDERL Swimmer Faces Health Realities: "'I know what happened to my sister, but I didn't think it could happen to me,' Champ said. 'I spent every day pushing myself to the limits, and I felt like I did everything I could to be healthy. I didn't feel like anything could happen to me.' Until it did."
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Friday, November 14, 2003
Posted
7:21 AM abc7news.com: Dr. Dean Edell: Heart 3-D: "Stanford University researchers are calling it a dramatic step forward in diagnosing heart problems. It's 3-D technology that gives doctors a detailed and more vibrant view of the heart than they've ever had before." See Dr. David Liang from Stanford show this new echo technology.
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Monday, November 10, 2003
Posted
10:20 AM Marfan syndrome: Get the facts; - marionstar.com: "Much to my amazement, I saw a young man on the screen that looked like my family member. Tall, long arms and legs. Long bony hands and feet. I was horrified at what I heard when the young man started talking about what he was going through physically. All the testing, medications, aches and pains. I thought to myself, 'This can't be what my family member has. He hasn't had any problems like what this young man is having.' " Thanks, Dodi!
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Saturday, November 08, 2003
Posted
7:38 PM Iowa City Press-Citizen: News: "Also, the project will help in the diagnosis of people suffering from congenital connective tissue disorders - conditions leading to the development of aortic aneurysms. In the case of Marfan syndrome, abnormalities of connective tissue can lead to the rupture of the aorta. 'We are trying to aid in the early identification of irreversible conditions in patients born with inherited cardiac disease,' Sonka said."
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Wednesday, November 05, 2003
Posted
6:06 PM ABC12.com: HealthFirst Special Report: "William Ackley has been battling a genetic disease since the age of 40. Now 57, he knows it is just a matter of time before an illness called Marfan Syndrome claims his life. " (Well, I'm not so sure it's that drastic!)
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