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)

Wednesday, July 09, 2003


Posted at 10:04 PM
I'm leaving tomorrow morning for Chicago and the NMF 2003 Conference. I'll be back early next week. I probably won't have access to a computer between now and then. If you send an entry for the Marfan Contacts page, please know I'll add or edit it as soon as I can.

Please do consider sponsoring me in the Blogathon 2003 (see below). I am very tired right now, and I haven't been up more than 14 hours. It will be hard for me to stay up 24! See if you can entice me to with your pledge! I am hoping to blog stories, thoughts, maybe poems written by people with the Marfan syndrome to let others know how life with Marfan can be different from others in some way, and the same in many ways. Then stay up late and check this Marfan Blog for a new entry every half hour! (Or go to bed, sleep tight and then check my blog in the morning of July 27 to see if I made it through).

I've got to get to bed now to catch a very early flight. See you later!


To see more of the Marfan Life Project Blog posts
click here
If you have dialup, it'll probably take a while to load. But it's worth the wait!

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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