Long, thin fingers typing away Marfan Life 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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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)

Monday, January 03, 2005

New! Marfan Life Forum
Posted at 7:09 AM
I've created a new bulletin board forum, the Marfan Life Forum that I hope will provide people yet another way to discuss issues dealing with the Marfan syndrome. This is separate from Marfan-List, and is an addition to the other online forums listed here.

Why the need for a new forum? Unlike Marfan-List, the Marfan Life Forum is online and visible to the public. I am organizing it in a way that will (I hope) allow people to easily find information and conversation about specific symptoms or concerns.

Check it out! Create an account (I will not, of course, sell or give away your email address!) and be the first to post!



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