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)

Wednesday, February 02, 2005

Mongolian girl comes to U.S. for urgent spinal surgery
Posted at 3:26 PM
Mongolian girl comes to U.S. for urgent spinal surgery: "At 6 feet 5 inches, it is easy to forget that Rentsenkhorlo, Horlo for short, is only a 14-year-old girl.
"Except when she smiles, she has a child?s smile," said Helen Gebhard, wife of Dr. James Gebhard, both of whom are hosting Horlo and her entourage during their five-week stay in America."


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