Marfan Blog
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

Blogging things of interest to those of us with the Marfan syndrome, by Jeanette Navia

Pledges to the NMF from the Marfan Blog during Blogathon 2003 totaled $1039 from 35 sponsors!

Blogathon theme: Long, bony fingers, tapping away throughout the day and long, long into the night. The Marfan Blog will stretch as the day progresses, filling with poetry, pictures and prose, laughter and fun, sadness, anger and loss, joy, boredom, confusion, fatigue and love, as life for those of us with the Marfan syndrome is portrayed. Among Marfan posts will be tall jokes (because usually we're tall), tall trivia, and occasional unrelated fun links (because our lives aren't only about Marfan).

Suggest a link

Visit MarfanLife
Join Marfan-List

Blogs/Journals from the Marfan Community

Long Tall Folks' Journal

Linka's Aorta Runs Amok

Barging Down D Nile

Jeanette's Skittering About the Web
Books of Interest

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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Archives

02/01/2003 - 02/28/2003 03/01/2003 - 03/31/2003 04/01/2003 - 04/30/2003 05/01/2003 - 05/31/2003 06/01/2003 - 06/30/2003 07/01/2003 - 07/31/2003 08/01/2003 - 08/31/2003

Tuesday, March 25, 2003

Posted 6:26 PM
Earth and Sky (with Block and Byrd) did a report on Abraham Lincoln and the Marfan syndrome! Check out


Thanks, Steve!
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Friday, March 21, 2003

Posted 7:51 AM
Two months ago, this guy (at the end of this article) was undeployable because of his Marfan diagnosis. But now he's deployed. Ground troops pushed into action.
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Friday, March 14, 2003

Posted 9:03 PM
Chromosomes 15 is where the genetic problems resulting in the Marfan syndrome occur.
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Posted 7:50 AM
Another article about Marfan! Fabrizius making most of it. It must be hard for a basketball player to know he needs to quit. As he says, though, "...there is more to life than basketball."
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Thursday, March 13, 2003

Posted 7:42 AM
Check out the graphics on the Polish Marfan website Marfan Polska.
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Wednesday, March 12, 2003

Posted 10:17 AM
For those of you who haven't yet checked it out, see the website of the International Federation of Marfan Syndrome Organizations -- A forum for worldwide communication for Marfan Syndrome Organizations.
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Monday, March 10, 2003

Posted 11:06 PM
Early miscues cause late problems in model of Marfan syndrome for those of you interested, and can understand the language.
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Sunday, March 09, 2003

Posted 10:43 PM
I'm back. The meetings were good (for the most part), the traveling wasn't good at all. But I'm now home safe and sound, and searching the 'net for Marfan-related stuff.



Growing old at a young age is an article about 18-year-old Sean Copeland, whose mother died from Marfan syndrome.
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Thursday, March 06, 2003

Posted 6:57 AM
I'm off to New York, to a board retreat for the National Marfan Foundation (I'm a board member). I'll be back Monday. I'm always worried about traveling (and today I hear there's snow in New York). But just think. If anything should happen to me, I won't have any more migraines!! I'll miss the rest of the stuff, though. (Please wish me luck getting everywhere, on time, safely. Thanks!) The board meeting should be interesting, though, since we'll see the new NMF Education and Research Center.

If you subscribe to Marfan-List, please make sure you follow the guidelines or your mail won't get to the list. I won't be around a computer to approve and forward your posts.

Okay -- I'd better go finish packing. See you!
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Saturday, March 01, 2003

Posted 8:51 AM
Ancient skeletons excavated in Peru - may indicate Marfan syndrome in family Moche Burials Uncovered @ nationalgeographic.com (Thanks, Anita!)
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Marfan Life Info