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)

Sunday, March 13, 2005

Newport News-Times: Family works to save son's heart
Posted at 10:44 PM
Newport News-Times: Family works to save son's heart: "To the casual observer, Alex looks every bit like a normal n albeit very tall n confident young man. The concave depression in his chest is easily hidden by clothing. He said he gets self-conscious, however, iwhenever I go to a swimming pool, I walk around with my arms up. And I canit play sports, I'm always short of breath."
...
"Alex's other condition, bicuspid aortic heart disease, involves his aorta - the largest artery which carries oxygen-rich blood from the heart to the rest of the body. Alex's condition involves an enlargement in the ascending aorta, the section of artery near the aortic root, which is under the most pressure and handles the greatest volume of blood."


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