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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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

Monday, July 18, 2005

NWA WorldTraveler | Growing Strong
Posted by Jeanette at 6:35 PM

NWA WorldTraveler | Growing Strong: "Long legs, long arms, long body—even long fingers. Little Haley Dostalik, age 5, sounds like a basketball coach’s dream.

In this rare case, however, it’s actually a concern. Haley, who lives in Urbandale, Iowa, with her parents, Martin and Kari, and 7-year-old brother, Adam, has Marfan syndrome. "
[snip!]
"Northwest Airlines created the KidCares medical travel program as part of its AirCares charitable assistance commitment. KidCares provides air travel to children 18 and younger (and one parent or guardian) who are unable to receive treatment in their home area. Donated WorldPerks miles are used to provide this free air travel."


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