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 16, 2005

TheDenverChannel.com - Health - Could Genetic Testing Help You Prevent Future Problems?
Posted at 5:55 PM
TheDenverChannel.com - Health - Could Genetic Testing Help You Prevent Future Problems?: "'Adults with genetic conditions really have been underserved,' said Dr. Matthew Taylor, director of the Adult Medical Genetics Clinic at CU's Health Sciences Center.

But that status is changing thanks to nearly 1,000 genetic tests now available. At the Adult Genetics Clinic at the University of Colorado Hospital, people like Kristen Stein can get life-changing information.

'They told us there was a genetics test for Marfan's (Syndrome) and up until that point we thought it was diagnosed based on certain characteristics,' Stein said."


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