Long, thin fingers typing away Marfan Life | Marfan Blog 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

What is Marfan syndrome? Marfan Contacts (pen-pals) - Offline until futher notice. Marfan-List e-mail group Personal websites & blogs Marfan pictures Famous people Tall links Marfan humor E-cards Dural ectasia Miscellaneous Marfan pages Marfan organizations Links to Marfan info Links to general medical info Contents of this site

Marfan Life 2004 Project Blog posts

Instructions for donating online to the NMF for Project Blog


Read description of MarfMan



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.

Archives

Project Blog 2004 posts

Blogathon 2003 posts

February 2003
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September 2003
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July 2004
August 2004
Marfan Blog
(news stories, events, newly discovered links)

Saturday, July 19, 2003


Posted at 8:48 AM
Important request!
I have promised to show the world the various aspects of our Marfan community during the Blogathon 2003 next week, July 26. I hope you will please help me do that by sending me material to blog! If you have Marfan or a related connective tissue disorder (including, of course, those who've been dis-diagnosed or whose Marfan diagnosis is tentative) or you have any experience with Marfan and have an interesting annecdote, a poem, short (a few paragraphs) essay, Marfan pictures you want to share, please send them to me now or as soon as possible either via e-mail or by filling in my Marfan Blog Blogathon request for materials form. I want to get all perspectives of Marfan -- good, bad, confused, etc. Also, any tall jokes, tall trivia, titles of tall-related songs ("Long Tall Sally," etc.). Thanks so very much!


To see more of the Marfan Life Project Blog posts
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For medical information about the Marfan syndrome that has been approved by the Professional Advisory Board of the National Marfan Foundation, see the NMF website.
Marfan Life Info