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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Marfan Life 2004 Project Blog posts

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Site created & updated by Jeanette Navia
Books of Interest

Chicken Soup for the Fisherman's Soul
Jennie Logsdon Martin has a story in here. Her story is as much about living with the Marfan syndrome as it is about fishing.

Own Your Health
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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September 2004
Marfan Blog
(news stories, events, newly discovered links)

Sunday, September 05, 2004

Tall Paul's Tall Mall
Posted at 7:42 PM
Alameda Times-Star Online - Bay Area Living: "But the store, Tall Paul's Tall Mall, founded in 1999 by Hartmann, is really designed with the tall in mind. Although business was rocky at first -- forming partnerships with manufacturers that might have to make five products in an order rather than 500 was difficult -- Hartmann is now in the black. That's gratifying to the 50-year-old architect and teacher at Vermont Technical College, who started the business in his spare time. "
Way to go, Paul!


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For medical information about the Marfan syndrome that has been approved by the Professional Advisory Board of the National Marfan Foundation, see the NMF website.
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