Long, thin fingers typing away Marfan Life | Marfan Blog 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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Marfan Life 2004 Project Blog posts

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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, June 16, 2004

TheBostonChannel.com - HealthBeat - Show To Raise Awareness About Deadly Disorder
Posted at 7:50 AM
TheBostonChannel.com - HealthBeat - Show To Raise Awareness About Deadly Disorder: "BOSTON -- When the curtain raises on the show 'RENT' Tuesday at the Wang Center, some local families are hoping it will also raise awareness about Marfan's syndrome -- a disorder of the connective tissue that could lead to sudden death. "

"Yamil, 4, is one of those at risk. When he was just 18 months old, his mother recognized he was growing disproportionately, with extra long arms and legs.

"We went to look for Easter shirts and there were no shirts in his size that would reach the appropriate length for his arms," Yamil's mother, Suzanne Kouri, said.


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For medical information about the Marfan syndrome that has been approved by the Professional Advisory Board of the National Marfan Foundation, see the NMF website.
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