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

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Marfan Blog
(news stories, events, newly discovered links)

Sunday, June 06, 2004

What are all these changes??
Posted at 12:42 AM
I've been making some changes to my websites, as you can see (if you've been here before). The major changes are to the Marfan-List site (which I've completely redone) and I moved this Marfan Blog to this front page of the Marfan Life website. What used to be on the front page is now on the Marfan Life Contents page.

I hope this doesn't mess anyone up. I'm trying to make things easier and better, not worse. I've still got some work to do on both sites, so right now, it's not perfect.

I'm getting ready for Project Blog (for one thing) and I want to add more easily accessible pictures to all pages. It might take all summer, though!


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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