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 24, 2004

Marfan Israel
Posted at 10:00 AM



Information about the Marfan syndrome is Hebrew can be found at Marfan Israel. Here is the page as a picture, so if you don't have Hebrew installed in your browser, you can see the Hebrew letters.

Miriam writes "We are about 10 people that have Marfan and meet once in a few weeks our goal is to have more people with Marfan so we can have a Marfan clinic in one of the hospital here, I have now about 50 people on my list, so we wrote a leaflet and we give it to nurses doctors and others,
the page is the leaflet."

Miriam also has her own website here.

Thanks, Miriam!


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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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