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)

Sunday, August 01, 2004

Event looks at concerns in genetics
Posted at 9:45 AM
Event looks at concerns in genetics: FORT WORTH - A cross section of laypeople, physicians, scientists and theologians gathered Saturday to determine whether they can help establish a line that people using reproductive genetic information should not cross.

They failed to arrive at a consensus.


"'What was missing from this forum is how little we know about genetics,' Simpson told participants. 'And because we know so little, regulation remains elusive. There are about 30,000 genes that we've identified, and we know what about 200 of those do. We have a vague idea what 2,500 or so do and have no earthly idea what the others do.'"


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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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