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)

Monday, July 12, 2004

Garden walks [in Nebraska] offer glimpse of summer blooms
Posted at 5:22 PM
This is old news -- the walk has already happened -- but it is an example of a way one can help to raise money for the National Marfan Foundation, which in turn helps those of us with the Marfan syndrome.

The Shawn Heldt Memorial Garden Walk [last] Sunday in Omaha's Morton Meadows neighborhood is a fund-raiser for the National Marfan Foundation. Gardens, open from 11 a.m. to 3 p.m., are at 4512 Pierce St., 4504 Pierce St., 4548 Mason St. and 3302 Woolworth Ave. Tickets, $4, may be purchased at any of the gardens.




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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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