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.

Archives

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February 2005
Marfan Blog
(news stories, events, newly discovered links)

Saturday, February 05, 2005

Dural ectasia in the Marfan patient
Posted at 9:48 AM
Wiley InterScience: Journal: Abstract: "Characterization of the symptoms associated with dural ectasia in the Marfan patient
Jared R.H. Foran 1, Reed E. Pyeritz 2, Harry C. Dietz 3, Paul D. Sponseller 4 *"

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Friday, February 04, 2005

SupportMarfan.com
Posted at 7:01 PM
SupportMarfan.com - We donate part of your online shopping dollars to Marfan research
This is a great way to give a bit more to the National Marfan Foundation without it having to cost you anything!

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SupportMarfan.com
Posted at 7:00 PM
SupportMarfan.com - We donate part of your online shopping dollars to Marfan research
This is a great way to give a bit more to the National Marfan Foundation without it having to cost you anything!

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Wednesday, February 02, 2005

HHMI News: New Inherited Disease Can Cause Early Aortic Rupture
Posted at 7:37 PM
HHMI News: New Inherited Disease Can Cause Early Aortic Rupture: "Researchers have identified a new inherited syndrome that can cause the heart's aorta to rupture earlier than other aortic aneurysm syndromes, such as Marfan syndrome. They said the newly identified syndrome is a relatively common disorder, which can be corrected with surgery if it is diagnosed early.
The researchers also found that the new genetic disorder offers important lessons about the complexities of disease-causing malfunctions in a particular gene which produces the receptor for a protein known as transforming growth factor beta (TGF?). "

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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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DNA-o-gram Generator - Send a DNA virtual postcard to your friends.
Posted at 3:23 PM
DNA-o-gram Generator - Send a DNA virtual postcard to your friends.
This is fun! And there's information about DNA, too.

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Tuesday, February 01, 2005

Greenwich Time - Holistic Insights: Beauty
Posted at 7:57 AM
Greenwich Time - Holistic Insights: Beauty: "Within the human species, there are also important physical characteristics that may provide important cues relating to health. For example, certain physical characteristics within the hands and body height may be cues indicating Marfan's syndrome and an associated predisposition to certain types of aneurysms."
Well, I guess it's kind of nice to have Marfan included in an article about beauty...

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