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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News

Saturday, August 06, 2005

Blogging takes work!
Posted by Bryan Jones at 7:04 PM

I just gotta tell ya, this is a lot more work than I thought it would be! I had visions of cutting the grass, doing some laundry, paying bills, washing the truck, etc etc, with all the extra time I would have between posts. Well ha ha on me! I've barely moved out from behind this laptop for the past 10 hours.

I knew Jeanette put a lot of her personal time and effort into maintaining her various Marfan-related web sites and the mailing list, but I now have even more respect for the work she does to support the Marfan community. Bravo Jeanette.


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