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

Sunday, May 30, 2004

Actor Richard Biggs dies at 44
Posted at 11:51 PM
Actor Richard Biggs dies at 44: "Richard Biggs, a television actor known for his featured roles in such series as Babylon 5 and Days of our Lives, died Saturday after collapsing at his San Fernando Valley home. He was 44.

He was rushed to a hospital, where he died, said Caren Day, a family spokeswoman. The cause was a tear in the aorta."
I have no idea if he had Marfan or not. -Jeanette

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Posted at 3:22 PM
Next weekend, June 6th, is the 11th annual Marfan syndrome walk-a-thon put on by the Northern Illinois Chapter of the National Marfan Foundation. Wish for good weather for the walkers and lots of fun for all who participate!

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Saturday, May 22, 2004


Posted at 1:01 AM
Chicken Soup For the Fisherman's Soul! Fishing the North Coast Of Oregon, Astoria, Seaside, Nehalem, Tillamook Check it out! Jennie Logsdon Martin's name amongst presidents! Her chapter is just as much about Marfan (which she and her son have) as it is about fishing.

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Thursday, May 13, 2004


Posted at 6:56 AM
Chromosomal Abnormality: "Connective tissue is the most abundant tissue in the body. It supports and protects various other tissues, is a vital component of all organs in the body, and provides strength and elasticity to blood vessels. For people with Marfan syndrome, weak connective tissues cause problems of the skin, eyes, blood vessels and bones. " (Thanks, Sharlini!)

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Wednesday, May 12, 2004


Posted at 6:00 PM
Loose links from Malaysia: "Now I can understand why she was an unusually long baby and developed into a gangly child. I can also understand her eye problems and her awkward speech which could be caused by her high palate and thus, crowded teeth -- all classic signs of Marfan which the doctor pointed out to me. The mystery of the little depression on her chest (as seen in a baby photo) is solved as I'm told that Marfan persons could have a caved-in breastbone because of the loose connective tissues."

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Monday, May 10, 2004


Posted at 6:50 PM
MISSOURI VALLEY TIMES - NEWS: "Marfan Syndrome: a disease of the connective tissue. That's a definition, but it doesn't begin to explain what having it is like for young Kelsie Stevens, Missouri Valley."

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