Marfan Life : August 2005 : Posted by Bryan Jones at 4:33 PM

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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Books of Interest

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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News

Saturday, August 06, 2005

Posted by Bryan Jones at 4:33 PM

Learning to Ride a Two-Wheeler...

Long Marfan Legs Come In Handy!

When our 5-year old daughter, Haley, announced that she wanted to learn how to ride her bike without training wheels this spring, we were worried that she'd take a lot of hard falls, including possible blows to the head and chest, which are no-no's for individuals with the Marfan syndrome. Well, we didn't need to worry. After two short lessons, Haley took off on her own and never looked back! She only fell two times, thanks to her long legs. Most of the time, all she had to do when she started to lose her balance was to put her legs down and that stopped her from falling. She has thoroughly enjoyed riding her bike this summer and it has been a great confidence-booster (and great exercise for her) as well! We are extremely proud of her! Kari & Marty Dostalik