Long, thin fingers typing away Marfan Life Long, thin fingers typing away
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
For medical information about the Marfan syndrome, visit the National Marfan Foundation

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Site created & updated by Jeanette Navia
Books of Interest

Roanne Weisman and her son have Marfan, and in some sections of the book they share their experiences.
Amazon.com

The Truth About Chronic Pain
A whole chapter is about Mathew Rudes' experiences. Mathew was born with severe Marfan symptoms.

The Official Patient's Sourcebook on Marfan Syndrome
I have not read this book and do not necessarily recommend it. You may want to see John's review of it at the bottom of Amazon.com's page.

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Saturday, August 06, 2005

Penguins
Posted by Bryan Jones at 4:02 PM

[image pengy missing]
We saw a nice G-Rated documentary last night called "March of the Penguins." What's that got to do with Marfan? Well, my sister Sally emailed me this morning to let me know she's watching the Blog. Back in 1992 when I arrived at Johns Hopkins for my first open-heart, there was a penguin sitting on my bed to welcome me. Sally had put him there, and he was goofy enough to ease my nervous mind considerably. Here he is, still chirping after all these years! More on the importance of family and friends in a later post.


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