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

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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Marfan Blog
(news stories, events, newly discovered links)

Friday, February 11, 2005

Brace yourself: Boy hopes bracelets will educate other on Marfan syndrom[e]
Posted at 6:51 AM
Henry Floyd hopes bracelets will educate other on Marfan syndrome
"Henry Floyd is asking people to wear their heart on their sleeve with a symbolic red silicone wristband.
The National Marfan Foundation's 'Have Heart' bracelet is the only one on 10-year-old Henry Floyd's arm. Henry has Marfan syndrome, a connective tissue disorder, and far from hiding his disease, Henry hopes to make more people aware of its existence. " -Daily News Tribune - Local News Coverage


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