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Marfan Syndrome: A Silent Killer
Richard Demak
February 17, 1986
A hidden congenital disorder claimed the life of volleyball star Flo Hyman and has sidelined three college basketball players
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February 17, 1986

Marfan Syndrome: A Silent Killer

A hidden congenital disorder claimed the life of volleyball star Flo Hyman and has sidelined three college basketball players

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Hyman's autopsy report will identify the cause of death as "classic cystic medial necrosis of the aorta." Here is what that means: Normal connective tissue, magnified by a microscope, looks like crocheted strands of steel, but the damaged spot on Hyman's aorta contained fibers that resembled "broken rubber bands," according to Rosen. During the volleyball match, her blood pressure had evidently risen so high that the weak spot in the artery could not withstand the increased force. When her heart pumped the highly pressurized flow of blood through the weakened aorta, the flow simply tore the aorta apart. The blood then flooded the sac surrounding her heart, smothering it. Rosen found evidence that Hyman's aorta had actually been torn twice: There was a three-week-old blood clot around the tear, indicating that an earlier rip in the same spot had already begun to heal when the fatal second rupture occurred.

Had Hyman's weakened aorta been discovered in time, she might have lived a long life. Pyeritz and his colleagues at Johns Hopkins monitor people diagnosed as having the syndrome with echocardiograms: Sound waves are reflected off the heart to a machine that converts the waves into a visible image. When the doctors see that the aorta is dangerously enlarged, they operate, replacing the damaged section of the artery with a Dacron tube. Without such surgery, people with Marfan's usually have less than half the normal life expectancy; with it, they can expect a full life span, so long as they limit the scope of their physical activity.

Because of the weakened aorta that plagues those with Marfan's, experts believe that contact sports and those requiring sudden exertion should be avoided. One bump to the chest or the strain of jumping or stretching can rip the artery apart. In fact, Hyman was probably very lucky to have survived as long as she did playing such an explosive sport as volleyball.

The risks to some basketball players may be equally great. Pyeritz says, "I take care of a lot of people in their 30s and 40s who played college ball, and their Marfan's was never picked up. I think there are one or two players in the NBA right now with Marfan syndrome." He also guesses there are dozens of high school and college basketball players who unknowingly have the disorder.

"The most difficult case is a kid whose identity is his height and his basketball," says Pyeritz, who has counseled his share of disappointed athletes. "We tell parents that just because their child is the tallest in the class doesn't mean he or she has to play basketball."

Robert Liburd, Chris Weisheit and Vory Billups are among those who should have a greater opportunity for long life because their Marfan's was detected before it could kill them. All three were hotly recruited high school stars who received basketball scholarships to NCAA Division I universities and had cases of Marfan's detected or confirmed at physicals before their freshman seasons began. In each of the cases, the team physician noticed during a routine exam some of the characteristics of the syndrome and referred the athlete to a cardiologist to examine the heart and aorta and confirm the diagnosis.

The three are still in school—Liburd at Temple, Weisheit at Maryland and Billups at St. Bonaventure—and although none of them will play so much as one second of college basketball, each will keep the athletic scholarship he was awarded.

Weisheit had heard of Marfan's before he learned that he had it. "My sister is a medical student back in Germany," says Weisheit, who is a native of Cologne. "She told me one day about this disease she was studying where the people were tall and needed to wear glasses. She said, 'You know, I think you might have this.' I told her she must be crazy."

It was a coincidence that Weisheit wound up at the school Patton had attended. Weisheit had a feeling something was wrong that afternoon last October when the team had its physicals. "Everyone else was in and out in five minutes," says Weisheit. "I was in for 40. I knew it had to be something." A few days later, Driesell and the team trainer, J.J. Bush, told Weisheit that he had Marfan syndrome. "Chris asked me what this all meant," recalls Driesell. "I told him that this was serious. I said, 'Chris, I had a player who died of this.' " The moment stuck with Bush, too, who remembers, "Chris said, 'I don't want to die playing basketball.' "

If it hadn't been for his myopia, Liburd might never have discovered he had Marfan's. He had worn prescription goggles during his senior year at Dewitt Clinton High School in the Bronx. "He said during the preseason running and weight training that he wanted to wear contacts in college. So we sent him to an ophthalmologist," says Tom Goelke, the assistant trainer at Temple. "The doctor said he found dislocated lenses, one of the signs of Marfan's." Temple coach John Chaney told Liburd the news after a practice the same week that Weisheit was told at Maryland. "Since then I've been having trouble sleeping," says Liburd. "Sometimes I think they're doing it for the best, and then sometimes I still think the decision of whether or not to let me play should have been left up to me."

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