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
Site created & updated by Jeanette NaviaBooks 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.
Marfan Blog
(news stories, events, newly discovered links)
Sunday, January 30, 2005
Recognizing New Aneurysm Syndrome Can Save Lives Posted at
4:07 PM Recognizing New Aneurysm Syndrome Can Save Lives: "A research team led by Johns Hopkins doctors has defined the physical traits and genetic basis of a new aortic aneurysm syndrome that is extremely aggressive and can cause death in early childhood. "
Tragedy Unites FSU Women | theledger.com Posted at
3:09 PM Tragedy Unites FSU Women | theledger.com: "Adversity has a way of triggering that kind of camaraderie. Tragedy struck June 8, when talented center Ronalda Pierce died unexpectedly of a ruptured aorta. Pierce, who would have been a sophomore, suffered from a rare genetic disease known as Marfan Syndrome.
Just a few weeks later, Semrau was gathering herself on vacation when she learned that standout Shante Williams, named to the ACC All-Freshman team last season, would have to sit out her sophomore year because she was pregnant.
And so missing their top six scorers from a season ago, starting an undersized lineup of five guards, the Seminoles have accomplished the unthinkable.
'We always talk about how you have to conquer hard things in order to achieve that championship mentality,' said Semrau. 'They just continue to conquer what's in front of them. I can't say enough about this team.'"
Marfan benefit dance planned at Boston Sheraton hotel Posted at
7:33 AM Cindy Wicklein has a broken heart. Not because of a failed romance, but because of Marfan Syndrome - a hereditary condition that affects the connective tissue. ... [read the rest of the story by clicking on the following link:] Marfan benefit dance planned at Sheraton hotel: "The Boston Beanstalks Tall Club and The National Marfan Foundation Massachusetts Chapter will sponsor the Have-a-Heart for Marfan Benefit Dance Saturday, Feb. 26, from 8 p.m. to midnight at the Sheraton Framingham, 1657 Worcester Road, Rte 9 west, Framingham. "
National Girls and Women in Sports Day Posted at
5:35 PM National Girls and Women in Sports Day: "NGWSD began in 1987 as a day to remember Olympic volleyball player Flo Hyman for her athletic achievements and her work to assure equality for women's sports. Hyman died of Marfan's Syndrome in 1986 while competing in a volleyball tournament in Japan. Since that time, NGWSD has evolved into a day to acknowledge the past and recognize current sports achievements, the positive influence of sports participation, and the continuing struggle for equality and access for women in sports."
Seminoles Women Overcome Obstacles Posted at
8:30 AM Seminoles Women Overcome Obstacles - from TBO.com: "``They just have each other's backs, and when you look at their unselfishness, they maximize each and every person's talent. They know what their limitations are, and they're able to go to their strengths.''
Strengths, as in the bond forged through anguish when 6-foot-5 forward Ronalda Pierce died unexpectedly in June from Marfan Syndrome.
And strength in the play of senior LSU transfer Roneeka Hodges, who couldn't have arrived at a better time for the Seminoles. "
Red have heart wristbands available from the National Marfan Foundation Posted at
9:10 PM The National Marfan Foundation: "The NMF's brand new have heart red wristband is now available from the NMF!"
ThePittsburghChannel.com - Healthcast: The Marfan Syndrome Posted at
9:23 PM ThePittsburghChannel.com - Health - Healthcast: The Marfan Syndrome: "Imagine having a relatively rare, potentially life-threatening disorder, but no one -- including emergency room doctors -- recognizes it. That's a reality for many people with the Marfan syndrome." Hey, Mark! Good for you!
New! Marfan Life Forum Posted at
7:09 AM I've created a new bulletin board forum, the Marfan Life Forum that I hope will provide people yet another way to discuss issues dealing with the Marfan syndrome. This is separate from Marfan-List, and is an addition to the other online forums listed here.
Why the need for a new forum? Unlike Marfan-List, the Marfan Life Forum is online and visible to the public. I am organizing it in a way that will (I hope) allow people to easily find information and conversation about specific symptoms or concerns.
Check it out! Create an account (I will not, of course, sell or give away your email address!) and be the first to post!
