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

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Marfan Life 2004 Project Blog posts

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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.

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

Saturday, July 26, 2003


Posted at 10:00 PM
I Stand in the Ruins
from Clinical Trials, by Julie Kurnitz

I stand in the ruins and sing
In love with life, I'm free
I look at what I've lost
At what cost
At what became of me

It seems I lost and found myself, my voice
Let go of lots of stuff I had collected
The things I didn't choose gave me a choice
And none of this has been what I expected
Each new day and new year lets me rejoice
Rejoice in being human and connected

I stand in the ruins and sing
In love with life, and free
There will be more to lose
Or find or choose
We'll see what we shall see

©Julie Kurnitz

Used with permission. From The Marfan Writers Anthology, , which can be purchased from the NationalMarfanFoundation.


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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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