The Rare Disease Champion Award
is given annually to a leader in college football who has realized his or her potential to make a positive and lasting impact on the rare disease community.
A sprained ankle may have saved Princeton running back Jordan Culbreath’s life. It was during the 2009 season when Culbreath, a junior, knew something wasn’t right. There were headaches, numbness and just plain exhaustion.
“I walked on the team as a freshman,” Culbreath said. “I’ve always worked hard so I didn’t want to speak up.”
Up until the ankle injury, he stayed quiet. Finally, though, he broke his silence after the injury and admitted something wasn’t right. After having some blood work, the team doctor wanted Culbreath to drive to the hospital immediately. His bloods counts were dangerously low and he was admitted within an hour.
Culbreath knew it obviously wasn’t a good sign when the doctors were ruling out diseases like leukemia; this must be serious. It took nearly a week, but finally they confirmed that Culbreath had aplastic anemia, a rare disease in which the immune system attacks bone marrow and prevents it from making necessary blood cells. A blow to the head could have killed Culbreath, which is why the ankle injury that sidelined Culbreath could have saved his life.
In a matter of days, his life had changed. From worrying about first downs and blocking, Culbreath was now worried about his life. He eventually received immune suppressant therapy treatment from the National Institute of Health (NIH) in Bethesda, Maryland, fortunately located close to his house. An expert on the disease was located there.
“I had never had a broken finger,” Culbreath said. “This was all a first for me.”
Culbreath went through months of treatment, including blood and platelet transfusions. Jordan says he had his good days and bad days. As far as football, the junior running back thought it was probably over.
“I went through senior day and everything,” Culbreath says.
But Culbreath was determined to make a comeback. He was given a clean bill of health 6 months after treatment and was allowed back in the weight room. Very few people knew of his intentions to try to play again because there was a chance it wasn’t going to happen. Culbreath spoke to the new coaching staff and all agreed if he could perform on the field, he could play.
“The whole meaning of football changed for me,” Culbreath said. “It wasn’t about personal goals, it was about getting back on the field.”
With grit and determination, two characteristics Culbreath had always had, he returned to play his senior year and appreciated every minute of playing time. Scoring a touchdown in the Lafayette game, his second game back, was extra special. Culbreath finished his football career at Princeton ranked 8th all-time in rushing with 1,935 rushing yards.
Jordan was an inspiration for his teammates and was named a co-captain this year. He was also an inspiration to the rare disease community. By using the blog CaringBridge.org, Jordan was able to reach out to other players, families and complete strangers inspired by his story.
“It definitely meant the world to me to see all these people wishing me well,” Culbreath said.
Culbreath will graduate in the spring with a degree in Mechanical Engineering and has already accepted a job in investment banking in New York City. His long-term health prognosis is good too, though he remains on medication and will need to be monitored. All in all, Culbreath knows it’s a happy ending to what could have been a very tragic situation.
“I’m very lucky. I know that,” Culbreath says. “I don’t take anything for granted.”