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Please Know What Marfan Syndrome Is...

June 23, 2014, 7:30 a.m. (ET)

If you come to visit us at USA Volleyball’s offices in Colorado Springs (please do!), and I am in town I will take you on a tour. One of the first stops, after the “Gold Room” where all staff meetings are held surrounded by pictures of all the US Olympic gold medal teams to date, beach and indoor, is this corner by CEO Doug Beal’s office.

It is one of several statues commissioned in honor of 1984 Olympic silver medalist Flo Hyman. The statue is also located on the grounds of the Colorado Springs Olympic Training Center, where she trained from 1977-1980; at Daiei’s gym, the professional volleyball team in Japan she was playing for when she died; and at the International Volleyball Federation’s (FIVB) headquarters in Switzerland. In all cases, the statue is mounted to have the top of the ball be her height, 6’5”, and here at USAV, we have a quote by her also:

“To be true to oneself is the ultimate test in life. To have the courage and sensitivity to follow your hidden dreams and stand tall against the odds that are bound to fall in your path. Life is too short and precious to be dealt with in any other fashion. This thought I hold dear to my heart, and I always try to be true to myself and others that I might encounter along the way – Flo Hyman

It has now been almost 30 years since her passing. Flo was playing in Japan in a pro league match when she asked the coach to be taken out. She went to the bench, collapsed and died. It was discovered only in autopsy that she had Marfan’s syndrome. 

Back then, Sport’s Illustrated did a feature article on her passing – CLICK HERE – which included this passage:

An autopsy performed in Culver City, Calif. at the request of Hyman's family six days after her death revealed that what killed this strong and vital 31-year-old athlete was a disorder much less common than a heart attack. Hyman, the star of the 1984 U.S. silver medal-winning team, had died of a ruptured aorta caused by Marfan syndrome, a congenital condition that exacts a disproportionately large toll among tall, lanky people such as Hyman, who was 6'5". For this reason, Marfan syndrome is—or should be—of special interest to physicians who treat basketball and volleyball players and other athletes who tend to be tall.

The pathologist who performed the autopsy, Dr. Victor Rosen, was given permission by Hyman's family to talk to SI about his findings. Rosen, once an assistant in the office of Los Angeles County coroner Thomas Noguchi, said that Hyman had been in superb condition except for a single fatal flaw—a dime-sized weak spot in her aorta, the massive artery that carries the entire flow of blood leaving the heart. That small spot, less than an inch above her heart, had been there since her birth, and there the artery had burst, exploding inside her chest as she sat on the sideline in Matsue. It was the result of Marfan syndrome.

In the months that followed, Sports Illustrated received dozens of letters (back in the pre-Internet era) stating that due to this story, a coach/parent had their son/daughter checked out and discovered that their athlete had the syndrome and their life was saved, even though they could no longer compete in high level athletic competition.  Even Flo’s own brother’s life was saved when they discovered he also had the syndrome.

So today I found myself shocked to learn that likely NBA first round pick Isaiah Austin from Baylor had just discovered he had the same thing as Flo. I am sharing this blog simply to ask you to be proactive in checking out your athletes who show the same symptoms as shared back in 1986:

The malady was first described in 1896 by Antoine Marfan, a French pediatrician. It is a genetic abnormality that affects connective tissue—the stuff that binds and supports all the cells in the human body. The defective genes that cause Marfan syndrome result in critical changes in the protein that gives connective tissue its strength. This weakens and, in effect, loosens the tissue, producing, in ways that are not always clear, characteristics by which victims of Marfan syndrome are commonly identified: tallness, long fingers, deformities of the breastbone (in some cases protruded, or pigeon-breasted, and in other cases indented) and nearsightedness. Hyman was nearsighted and wore glasses off the court. To some experts, Abraham Lincoln's long fingers and great height (he was 6'4") indicate that he may have suffered from the syndrome. It has also been suggested that the long fingers that helped account for Niccolò Paganini's dexterity on the violin were the result of Marfan syndrome

All athletes who are tall and nearsighted do not have the problem – just 1 in 10,000 it is estimated. Still, as our sports get taller, we need to make sure that this is checked for in advance, not as it was in Flo’s case, post mortem. Isaiah Austin is devastated of course, but he is alive, and likely the exposure to this level of athlete discovering the malady in such an inopportune time will help others as Flo once did decades ago. 

       

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