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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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.
Florida State University basketball player Ronalda Pierce dies Posted at
7:05 PM Here are links to a few more stories about Ronalda Pierce's death. She was just 19 years old. From the Tallahassee Democrat FSU women's basketball player dies
Name: Alissa Time: Thu Jun 10 19:29:09 2004 Email: aligatoruf
I write to you today after reading a recent Tallahassee Democrat article about Ronalda Pierce’s tragic death. Although the final autopsy reports have not been finalized yet, it is likely that her death was caused by an aortic aneurysm associated with Marfan’s syndrome. The FSU athletics policy should be changed to require the detection of Marfan’s syndrome in their basketball and volleyball players prior to their participation in school athletic events.
Ronalda Pierce’s recent death could have been prevented by a simple medical evaluation by a knowledgeable physician, one that should have occurred prior to her playing basketball for Florida State University. Marfan’s syndrome is a rare connective tissue disorder that is usually found among extremely tall people like Ronalda. Marfan’s syndrome can be detected in a variety of ways including echocardiograms, slit-lamp tests, or even more cost effective methods by asking about family history or by determining proportionality of the skeleton. My guess is Ronalda’s heart condition did not appear overnight, but like most Marfan’s syndrome patients, began dilating many years ago and slowly worsened, exacerbated by the strenuous exercise of basketball until it ruptured causing Ronalda to lose her life. What makes matters even worse is that Ronalda’s death was completely preventable. If Marfan’s syndrome is detected early enough physicians can prescribe drugs, like beta-blockers that can slow or even stop the expansion of the aortic wall, or can operate on the heart to completely correct the problem.
According to Rob Wilson, FSU spokesman, ‘FSU does not test for Marfan’s Syndrome’. It is my belief that these actions are extremely careless. How many more athletes have to die needlessly before action is taken? The policy at Florida State University should be changed to help prevent the unnecessary deaths of our top athletes. A medical evaluation, including Marfan’s syndrome detection needs to be required before volleyball and basketball players are allowed to participate in college athletics
Young hopeful athletes come to Florida State University for a free education and a chance to play ball, never expecting to give their lives for this opportunity.
I would like to give my deepest sympathy to Ronalda’s family and others who have lost loved ones to Marfan’s syndrome. My hope is that the Florida State University Athletic Department will learn from this recent tragedy and change their policy so future athletes do not meet the same demise as Ronalda.
I don't know if it is all that simple. I do agree that screening someone for life-threatening illnesses and heart defects is a good idea, but what then, after the screening? Does the school refuse to let someone with Marfan (or other disorder) play on the team? If someone is accepted to a college on a sports scholarship, should the screening take place before or after the scholarship is awarded? If before, does that mean all potential scholarship winners should be screened beforehand, and the offering of the scholarship be based on their health status? (Maybe this is already the case for other disorders? I don't know).
If a student knows he or she has the Marfan syndrome, should the decision whether to take the risk to play or not be up to the student or to the school? College students are (usually) over the age of 18. Should the school be privy to their private health information? Should a student be forced to disclose all his or her health-related problems?
While I definitely think there should be more screening of the Marfan syndrome (but by whom -- the school, or just by the medical community in general, or both?), I have to ask, what happens after a positive diagnosis is made? Would the school simply say, "Sorry, you're defective, you can't play with us." Would counseling be offered? Would health care be offered (by the school?) In other words, what should the policy actually be -- that the school screen students and give them the information and leave the choice up to the (adult) student as to whether or not to risk his or her health, or should the school refuse to let him or her play?
Also, remember that with the Marfan syndrome a diagnosis is very difficult even by some of the doctors who have studied the syndrome for years.
There have been athletes who have been diagnosed with the Marfan syndrome who have not died. Where does one draw the line -- if a student's aortic root measurement is, for instance, 3.0? 4.0? Etc.? Or if a doctor suspects a student might have the syndrome or "a related disorder," as is the case with many people who have some of the symptoms, or all of the symptoms but not with measurements that fit neatly into the diagnostic criteria.
While screening does sound like a very positive thing, in thinking the whole issue through, it doesn't seem as cut and dried as it could be.
