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

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

Sunday, August 07, 2005

Goodnight from the Philadelphia half of the MarfBloggers team.
Posted by Bryan Jones at 8:33 AM



An advantage to having Marfan? Long arms capable of snapping self-portraits. :-) As you can see, Animal has fallen asleep on my shoulder, Penguie has gone cross-eyed, and I've developed a slightly crazed look.

I'd like to say "Thank you" to everyone who pledged this year and to all of you who followed along and emailed your comments and support.

I'd also like to thank my wife Barb for going out and capturing a very very large cup of coffee and some donuts to keep me going all day and night. And a great big Thank You to all the folks in the Marfan community who live with this condition every day and who are working to help us all live longer, healthier & happier lives.

Cheers,
Bryan


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