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

Marfan Life table of contents

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Blogs/Journals from the Marfan Community

Long Tall Folks' Journal

Maybe... (A love story by Thomas Schrantz)

Linka's Aorta Runs Amok

Barging Down D Nile

Thick n Thin

Jeanette's Skittering About the Web
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

Blogathon 2003 posts

February 2003
March 2003
April 2003
May 2003
June 2003
July 2003
August 2003
September 2003
October 2003
November 2003
December 2003
January 2004
February 2004
March 2004
April 2004
May 2004
June 2004

Wednesday, June 09, 2004

Sports can aggravate Marfan syndrome
Posted at 6:18 AM
Tallahassee Democrat | 06/09/2004 | Sports can aggravate Marfan syndrome: "People diagnosed with Marfan syndrome are advised to make changes in their lifestyle.
Refraining from vigorous sports is at the top of the list.
'With your heart rate up and your blood pressure up as you work harder, the blood pumps harder,' said Eileen Masciale, director of communications for the National Marfan Foundation. 'And with the aorta, the wall is weak in Marfan syndrome. You don't want the constant pounding of the blood in there because that would just enlarge the aorta to the point where it could tear or rupture.'"


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