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

Things of interest to those of us with the Marfan syndrome

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Join Marfan-List

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, February 18, 2004


Posted at 11:32 PM
Pectus Excavatum: "Patients with pectus excavatum have as high as a 60 percent incidence of mitral valve prolapse (the flaps on one of the heart valves billow backwards when it closes). Many patients with pectus excavatum also have scoliosis (curvature of the spine).

There is an association with certain other syndromes, including Marfan syndrome (which affects connective tissue throughout the body)"


Saturday, February 07, 2004


Posted at 8:01 AM
02-07, Longview, Texas: Event seeks to raise awareness of heart disease among women: "Another heart disease survivor, Jana Sellers, a teacher at Pinewood Park Elementary School, was honored during the event.
Sellers, at age 30 and four days after giving birth to her first child, had a stroke and part of her aortic wall tore.
Doctors later told her she had Marfan's syndrome, a connective tissue disorder that affects a person's blood vessels, eye lenses and ligaments.
She said she's glad to be able to help promote heart disease awareness. "


Thursday, February 05, 2004


Posted at 11:51 PM
The National Marfan Foundation: "The National Marfan Foundation is re-launching its web site, www.marfan.org, to better provide the medical community and the general public with information about the Marfan syndrome."


Wednesday, February 04, 2004


Posted at 8:54 AM
Margaret Kristl: "Margaret Kristl, 43, wife of Kenneth Kristl and daughter of Dr. Sheridan Patrick and Mary Clare McCabe, died on Wednesday, January 28, 2004 from complications of Marfan Syndrome. She is lovingly remembered by her sisters: Elizabeth McCabe, Catherine McCabe Grossman and her husband David, RoseAnne McCabe Halperin and her husband Gary, and Patricia McCabe; and Goddaughter Madelyn Lisa Halperin. " ... "In lieu of flowers, donations should be made to the National Marfan Foundation, 22 Manhasset Ave., Port Washington, NY 11050."
Published in the Chicago Tribune from 2/2/2004 - 2/4/2004.



Posted at 6:33 AM
BYUCougars.com General Athletic Press Release (2004-02-03): "NGSWD began in 1987 as a day to remember Olympic volleyball player Flo Hyman for her athletic achievements and her work to assure equality for women's sports. Hyman died of Marfan's Syndrome in 1986 while competing in a volleyball tournament in Japan. "
Marfan Life Info