Long, thin fingers typing away Marfan Life 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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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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(news stories, events, newly discovered links)

Sunday, November 21, 2004

Catching trouble
Posted at 5:35 PM
Catching trouble Jennie Logsdon-Martin would rather be reaching her long fingers into a jar, grabbing a fist-size glob of brilliant pink salmon eggs, squirting them with Marie's Sticky Shrimp Scent and baiting a hook.
...
Good luck, Jennie!


Jennie Logsdon-Martin had emergency surgery this morning 12/10/04 after suffering from chest pains. Doctors diagnosed an aortic disection related to marfan, and rushed her to a Portland Oregon medical center for aorta repair/valve replacement.

As I am sure those familiar with marfan may know, this surgery is a very delicate risky correction to a life threatening condition.
I have no additional information as of 4:00 pm Pacific time, but ask that you offer your prayers and positive energy at this time.

Please see the discusion board at IFish.net (Jennies "baby") for further updates and information.

RVW

By Anonymous, at 7:03 PM  

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