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

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

Sunday, July 27, 2003


Posted at 12:11 AM
Cool! Ryan mentioned the Marfan Blog on the front page of the Blogathon web! Thanks!

There are quite a few others blogging for foundations for rare and not-so-rare disorders:
Wampum is blogging for the Cure Autism Now Foundation
My Little Aspie is blogging for the National Alliance for Autism Research (for their son who has Asperger's syndrome)
Wizbang is blogging for the Doug Flutie Jr. Foundation for Autism Research
Not Geniuses is blogging for Ascent, a School for Individuals with Autism
And that's just those blogging about Autism! Check out the others bloggers or ride the web ring and see who they're blogging for.
I do think this Blogathon is really great.


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