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

Sunday, March 13, 2005

Party for 'Purple' will remember his birthday
Posted at 10:49 PM
Pendle Young Musician in Colne, Essex (UK): "A memorial party for Jason Ward (25), known to many as Purple, has been organised by his family, and will be held at Atlantis, at the Hendly Hotel, on Friday, celebrating what would have been his birthday this Wednesday.
But the partygoers will not just be remembering Purple's life ? they will also be learning about Marfan Syndrome, the condition which led to his tragic death."


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