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)

Sunday, July 25, 2004

My award
Posted at 7:28 AM
I was maybe not going to post this, since it might look like I'm bragging. But the way I feel right now? I've been up for more than 24 hours, and I do feel I deserve something like this! At the National Marfan Foundation conference in Beverly Hills this month, I was surprised with a "Heart of the Matter" award. It's sooo beautiful!


The inscription reads "Jeanette Navia In recognition of your commitment to the NMF and the Marfan community through the "Marfan List" and blogging for Marfan awareness. July 2004." I blogged in the Blogathon last year, and was told that was when the decision was made. It's so pretty! Thanks, everyone who was in on this!

I'm so punchy!


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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.
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