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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)

Saturday, July 24, 2004

Shawn Heldt Memorial Garden Walk
Posted at 3:57 PM



Click to enlarge


The Shawn Heldt Memorial Garden Walk Sunday in Omaha's Morton Meadows neighborhood was a fund-raiser for the National Marfan Foundation.

From Shawn's mother Sherry: "We have just finished having a Shawn Heldt Memorial Garden Walk in memory of our son Shawn who died on Dec 11, 2000 at the age of 22 of an aortic disection and aneurysm after being misdiagnoised at our Local hospital. We raised $702.00 for Education and Awareness/Emergency Medicine Campaign for the NMF. We also passed out The Marfan syndrome fact sheet and had a easel full of information on the symptoms of Marfan's, we hope this has help raise awareness in our community.

This is a picture of all those people who donated their yards to walk through to make this Garden walk successful, including Roger and I.

Good going, Sherry and Roger!!



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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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