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

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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 17, 2004

Rare but Real: How to tell if you have Marfan syndrome
Posted at 1:15 AM
Rare but Real, from The Patriot Ledger at SouthofBoston.com: "When [Claire] Avitabile was about 4 years old, Helms noticed she held books close to her face to see them. Avitabile was brought to an ophthalmologist who said she had a dislocated lens. The ophthalmologist also knew Avitabile's extreme height, long arms and legs, plus the dislocated lens, were signs of a potentially fatal disease - Marfan syndrome."


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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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