Marfan Life : August 2005 : Posted by Bryan Jones at 9:00 AM

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 9:00 AM

Good day everyone! It's a beautiful day for a Blogathon, and I'd like to welcome you to Jeanette's MarfanLife Blog!

My name is Bryan Jones and I'll be Blogging every half hour for the next 24 hours to raise awareness of the Marfan Syndrome, and to raise money for the National Marfan Foundation.

Jeanette is at the Marfan conference in St Louis this weekend, but she will be (virtually) stopping by throughout the day and night. Jeanette has done most of the legwork to get us prepared for this year's Blogathon, now I get to do the easy part.

Over the next 24 hours we will be posting information related to the Marfan Syndrome. You'll hear personal stories from those with the syndrome, as well as from friends and family. We have lots of pictures, some poetry, and plenty of good stuff to post.

Cheers!
Bryan

"Theeasypart," hah! Wait til 2:30 a.m. and see how easy it is! Hi Bryan and everyone. I'm in St. Louis, playing hookey right now from the medical presentation. It's interesting stuff, and will need to go back in in a while, but I just thought I'd say hello and make sure Bryan got up this morning in time!
Thanks to Teri Dean and to Ellen England for the use of their laptops!

Jeanette

By Jeanette, at 10:02 AM