December 2, 2016

Webster Quidditch player copes with Marfan Syndrome, stops playing

As recently as two months ago, freshman Joey Dennis was playing Quidditch for Webster University in a tournament at Southern Illinois University in Carbondale, Illinois. He suffered a concussion at the tournament. Dennis  took a week off from Quidditch for fall break, but after another visit with his doctor, he was advised to stop playing Quidditch altogether.

Joey Dennis in action for the Webster Quidditch team. Photo contributed by Nick Apple

Joey Dennis in action for the Webster Quidditch team. Photo contributed by Nick Apple

Dennis has Marfan syndrome, a connective tissue disorder which affects the heart, lungs, skeletal development and eyes. After consulting with his doctors, he has stopped playing the sport he had grown so attached to.

Dennis discovered he had Marfan syndrome when he was four years old, and said he was never allowed to play organized sports growing up. He said he saw Quidditch as a way to stay active when other opportunities were denied to him.

“When I was a kid I wanted to be an athlete. I wanted to be in the military. I never could, and I never will, but I’ve come to terms with that now,” Dennis said.

However, he noted his decision to play may not have been in his best interest, at least in terms of his well-being.

“I guess it was a stupid decision, as far as health reasons go,” Dennis said.

The Activities Procedure.

Sarah Gruett, co-captain of the Webster Quidditch Team, has been on the team since she was a freshman and has watched it grow in each year since. She noted how Quidditch represents a mixture of athletic and “nerdy” interests.

President of the Quidditch club Natalie Gawedzinski played soccer in high school, and said Quidditch provided her an outlet to stay active in a new way.

“It’s a full contact sport,” Gawedzinski said.

Multiple members of the Quidditch team have compared the activity to rugby and Dennis himself described it as more intense than most people think.

So when Dennis told Gruett of his condition at New Student Orientation (NSO) before Quidditch began, she remembered red lights going off in her head. (Gruett and Gawedzinski said the Quidditch match during NSO plays a large part in recruitment for the club.) Despite her initial concern, she trusted Dennis to be responsible with how he handled his condition.

“I really didn’t think I needed to know the specifics to look for, just to be aware that it was a problem I needed to be aware of,” Gruett said.

Gruett described Dennis as an energetic, determined player and said it took three people to bring him down just before he suffered his concussion.

Dennis recalled moments before the play, but cannot remember much in the immediate aftermath.

“I was just ploughing through people,” Dennis said. “I was hitting them left and right. This one guy, in my last game, he decided to play a bit dirty.”

Dennis, who stands 6 feet 7 inches, was then toppled by the player and landed on the back of his head causing the concussion.

“There was a solid 15 minutes where I didn’t remember anything,” Dennis said. “Apparently there was a really cute girl from another team who came over to talk to me when it happened. Unfortunately, I don’t remember.”

Gruett then accompanied him to the hospital She said she began to think about Dennis’ condition again when they reached the hospital.

While she felt concerned about his condition, she also trusted Dennis to know his boundaries better than she did and never asked him to stop playing.

“I don’t feel I’m in a place of power to tell someone ‘You can’t play my sport because you have a condition’,” Gruett said.

As a student activity, all students who wish to play Quidditch are required to fill out a liability waiver, which includes insurance information and emergency contacts. But because there is no governing body for collegiate Quidditch such as the NCAA, no physical examinations by a doctor are required to play. (The NCAA requires all student-athletes complete and pass a physical before they can participate in practice, and the Missouri High School Athletic Association has listed Marfan Syndrome and the stigmata that accompanies it in their procedure for doctors.)

Director of Student Engagement Jennifer Stewart said student activities are designed with the idea of allowing all students to participate.

“One of the stipulations of how SGA process is set up, is that all of the clubs, if they are funded, have to be open to anyone who wants to participate,” Stewart said.

And while she recognized the inherent higher risk of certain recreational clubs like Quidditch in comparison to non-recreational clubs, Stewart maintained it is the responsibility of the student to manage that risk.

“As an adult. . . if it (health) is an issue, it’s his responsibility to be responsible and bring it forward,” Stewart said.

In Dennis’ case, Stewart said she was not aware of his condition and that no one from the club spoke with her about it. If they had, she said it would have been her instinct to speak with him further about his condition, but that legally she does not know if she has the power to stop someone from participating in a club. And while Stewart noted the possible benefits of further regulations, she said it would probably do more harm than good for the clubs, and that structurally, it would be difficult.

“Because quidditch is not a sport, we don’t have the same oversight of an NCAA program. Would it be beneficial? Probably. Do we have the resources to do that? Not really,” Stewart said.

Gruett agreed that clubs like Quidditch might struggle under further regulations depending on how it was implemented.

“The physical might be detrimental if it were required by the club itself. But if the school decided it, I’d be OK with it,” Gruett said.

What is Marfan Syndrome?

Photo contributed by Nick Apple Joey Dennis looks to score during the Webster Quidditch team’s trip to Southern Illinois University on Oct. 18.

Photo contributed by Nick Apple
Joey Dennis looks to score during the Webster Quidditch team’s trip to Southern Illinois University on Oct. 18.

Dr. Alan Braverman is the Alumni Endowed Professor in Cardiovascular Diseases at the Washington University School of Medicine and the Director of the Marfan Syndrome Clinic. He also treated Dennis for his condition.

Braverman said the lining of the aortic wall is the most pressing concern for people with Marfan syndrome, but noted the disorder can manifest itself in a variety of ways.

“Most people who have Marfan are affected by it,” Braverman said. “It just depends. Sometimes it’s more severe in the skeletal structure, sometimes it’s more severe in the eyes, sometimes, it’s more severe in the heart. It is possible to have a ‘mild’ case of Marfan syndrome.”

Dennis however, characterized his condition as “severe.” He had open-heart surgery when he was 16 years old. Also, because Marfan syndrome is genetic and dominant there is a 50-50 chance of passing it on.

“I’ve always really wanted a family. And it (Marfan) really messes with your mentality, where there’s a 50/50 chance that your kids will have it also,” Dennis said.

In terms of athletics, because of the concern over placing stress on the aorta, Braverman said, in general he encourages patients with Marfan syndrome not to play high-intensity sports or activities. He did note, however, the importance of exercise for people with Marfan, and the difficulty in drawing the line between what is safe and what is not. As a rule of thumb, Braverman said if a person with Marfan syndrome can carry on a normal conversation while exercising, they are not at risk.

“Intense exercise, like all-out running or heavy lifting where you have to strain, causes the blood pressure to go up in the aorta. It increases the blood pressure, the stretch, and the force on the aortic wall. So we think it causes risk of the aorta stretching further, or even a small risk of it tearing or bursting at the highest level of activity if people are at risk. We generally tell people we think it’s safer to do exercise or activity at a lower level.”

A tear or bursting of the aorta can be fatal.

“Sports that involve intense physical activity, training and collision put the person (with Marfan) at higher risk,” Braverman said.

Moving Forward

Dennis has continued to stay involved with the Quidditch team through playing a low-intensity practice game called “Ultimate Quaffle.”

Despite his condition, Dennis participates in a number of activities inside and out of school. He and his father are avid hunters and Dennis has hunted animals ranging from deer and turkey to exotic African wildlife like wildebeest and waterbuck.

Further, Dennis is a vocal studies major and he sings in the Webster University choir, who have performed several concerts to date, including pieces by Bach and Mozart. Dennis turned down opportunities to go to colleges for vocal arts in New York and Los Angeles to go to the cheaper option of Webster.

Nevertheless, he said despite his concussion and ankle injury earlier in the year, he would still play if he could.

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