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
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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.
NMF Conference 2004 in L.A. July 7-10 Posted at
11:35 AM I'm planning to go to the National Marfan Foundation conference at the Beverly Hilton in July. It'd be nice to see who else is going. If you want, you can add a comment to this post and (if you're not a Blogger user), post anonymously but somehow let us know who you are. If you're a subscriber to Marfan-List, let us know that, too! Keep in mind, though, that if you do not want the world to know you'll be there, do not add a comment with personal information. This is indexed in most search engines; please keep that in mind.
Hello...I just came across your site. I wanted to let you know that my best friend, Alexis, passed away on Wednesday, June 09 from complications due to heart surgery. Alexis was 40 years old and had Marfan's. In 1991, she had her first heart surgery to repair her mitral valve. They put in a mechanical one. She went in to surgery on June 3rd, 2004, to repair another valve. For whatever reason, her right ventricle stopped working, and Alexis passed five days later.
Alexis passed the day after b-ball player Ronalda Pierce.
I wanted to honor her memory, and let you know about her and her passing. I know I don't know you, or your readers...but it is comforting to connect with other people facing Marfans. Alexis knew her heart was bad, but she continued to live full force. She was a true, kind, gentle soul.
