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

Home What is Marfan syndrome? NEW Marfan Life Forum Marfan Contacts (pen-pals) - See Marfan Life Forum 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


Read description of MarfMan



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.

Archives

Project Blog 2004 posts
Blogathon 2003 posts

February 2003
March 2003
April 2003
May 2003
June 2003
July 2003
August 2003
September 2003
October 2003
November 2003
December 2003
January 2004
February 2004
March 2004
April 2004
May 2004
June 2004
July 2004
August 2004
September 2004
October 2004
November 2004
December 2004
January 2005
February 2005
March 2005
Marfan Blog
(news stories, events, newly discovered links)

Sunday, March 06, 2005

Letter to the Editor of The Daily Record from the NMF (see article blogged below, "Profound Rebound")
Posted at 8:12 AM
Marfan Syndrome:
"I read Mark Kitchin's article about Ken Milesky, a high school athlete who was diagnosed with the Marfan syndrome, with great interest. It is quite difficult for anyone to be diagnosed with a chronic, progressive condition that is life-threatening; it is probably the most heart-breaking for a youngster who must give up competitive sports which significantly contribute to his identity.

"Replacing a section of the aorta when it is enlarged -- the procedure that Milesky went through --can prevent that portion of the blood vessel from tearing. However, it is important to note that the rest of the aorta is still at risk of enlargement, which could lead to a tear or fatal rupture. ..."


Post a Comment
Marfan Life Info