Rare disease doesn’t stop standout college volleyball setter

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A rare and life-threatening disease benched her dream, but Cary resident Colleen Smith is no quitter. When faced with the unexpected opponent – she attacked it.

“When Nadia offered me my scholarship to play here, I was so excited,” Collen said.

In her first season at DePaul University, Colleen Smith is a standout setter.

“She goes hard every single day in practice, she wants it. I think it’s exciting for her to just be able to fulfill that dream of hers,” said Nadia Edwards, the DePaul women’s volleyball head coach.

Colleen’s dream of playing college volleyball became a reality after an all-American high school career.

“My junior year we won state, and then my senior year we ended up being 41-1. If we would have won our state championship game, we would have been ranked No. 1 in the country,” Colleen said.

Scholarship offers from Division I schools rolled in. Colleen had her choice, and she chose Indiana University.

“I fell in love with the facilities there, the volleyball program and the girls on the team. I just knew it was going to be the perfect fit for me,” she said.

But the excitement was short-lived. Soon after she arrived at IU and began practicing with her new team, her body broke down.

“My knees were so swollen I could barely run or jump. I would wake up in the morning and get random bloody noses.”

The most alarming symptom surfaced during a practice.

“I was feeling horrible. I was running off the court throwing up blood,” Colleen said.

The team’s athletic trainer took her to the hospital. Colleen was so anemic, she needed two blood transfusions.

“The doctors were like, ‘How are you even lasting through practice? How did you not just collapse on the floor?’” she said.

Still, her symptoms were mysterious. Weeks later, Colleen was sent to a rheumatologist.

“She took one look at my knees, my eyes my nose and my fingers because they were swollen, and she was like, ‘You have Wegener’s Granulomatosis,’” Colleen said.

“It’s a disease of the immune system, the immune system we have to attack infections. Unfortunately hers went awry, and it’s been attacking her blood vessels in her body,” said Dr. Roger Rodby, a nephrologist at Rush University Medical Center.

It’s an autoimmune disease so uncommon, Rush physician Dr. Roger Rodby sees only one to two cases a year – and rarely in teenagers.

“She was falling apart pretty quickly. She was playing volleyball when she had this disease, when it was affecting her lungs,”  Dr. Rodby said.

But not for long. Colleen needed aggressive treatment — high doses of the steroid prednisone and cyclophosphamide, drugs with brutal side effects.

“Both of these meds are to shut down her immune system from attacking her own body. She took that for several months,” Dr. Rodby said.

In early 2012, she began a series of chemotherapy treatments to destroy the bad cells in her body. The goal was remission – there is no cure for Wegener’s Granulomatosis.

“We don’t typically talk cure with these diseases because they can come back,” Dr. Rodby said.

Throughout her treatment, Colleen thought about a comeback — her own. But it would not be at IU.

“I sat down with the head coach at IU and our athletic trainer, and that’s when they told me I wouldn’t be playing volleyball again. That was the hardest thing. I had just beat this crazy auto-immune disease, and then I’m being told I won’t ever be able to play at the school that I fell in love with. I just told myself, ‘I’m gonna get through this, I’m gonna come back and play again.’”

As Colleen searched for a new school, DePaul head coach Nadia Edwards was searching for a setter.

“We did do a little bit of research and knew about her medical history,” Edwards said.

The coaching staff spoke with Colleen’s physicians including Dr. Rodby, who monitors Colleen’s kidney function and blood work for any flare ups.

“Right now it’s good news because we’ve got medicine to keep her in remission and really good news for her because she’s tolerating it so well,” Dr. Rodby said.

The good news was good enough for DePaul.

“I believe everything happens for a reason. I was meant to go to Indiana not to play volleyball, I was meant to go there to get healthy. In the end it saved my life. This is my school now, DePaul. I love being here,” Dr. Rodby.

DePaul wraps up their volleyball season this weekend with two home matches. Colleen has two years left of NCAA eligibility — and with the help of maintenance medication, her doctor says he has no reason to believe she’ll relapse.

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