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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August 2004
Marfan Blog
(news stories, events, newly discovered links)

Saturday, July 24, 2004

Comments
Posted at 7:00 PM
Hey, I think I figured out why people haven't been posting comments! I've added an explanation above (in purple). I know, it's confusing. The comments are part of Blogger, rather than part of Project-Blog. Blogger is the service I use to publish this blog. When you go to post a comment, you're asked to sign in. Well, it doesn't explain too well what you are signing in to. You would be signing into Blogger, if you had a Blogger account. I'm thinking most people reading this do not have Blogger accounts. Therefore, you can't sign in or you have to create a whole new account. You can post Anonymously, though, and it would sure be nice to get some comments! Just click on "Or post anonymously" when you get to that part. You can sign your name in the body of the comment, of course.


I tried several times to post, and even tried to create an a/c, but it didn't take. I found your listing on Project-Blog as I was looking for someone else I was sponsoring, saw what you were working for, and decided to sponsor you in memory of a friend who had just died. When I looked further down in your blog, there she was. I considered Julie a friend. I knew her from her theatre and cabaret performances and reviewed her amazing show, Clinical Trials for a few small publications. I appreciated her wit and intelligence and only wish I'd had more chances to hang out with her. So this is for Julie, and thanks. I wish it could be more.

By Anonymous, at 8:25 PM  

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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