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)

Thursday, March 06, 2003


Posted at 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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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.
Marfan Life Info