Registered as “The Rolling Crohn’s,” Brent Hinson, his wife Mandy and their son Xavier participated in the “Take Steps for Crohn’s and Colitis” walk in Nashville on June 24
“I have Crohn’s disease, but Crohn’s disease doesn’t have me,” Brent Hinson said about the disease he was diagnosed with 12 years ago.
Hinson, an announcer for KF99/KQ105 of Union City, currently serves as the advocacy chair for the Tennessee chapter of the Crohn’s and Colitis Foundation of America, or CCFA, a nonprofit organization dedicated to finding a cure for the diseases and improving the lives of children and adults affected by them. He became the advocacy chair in 2009.
“I go to congressmen or senators and try to influence them to co-sponsor bills that will be to the benefit of inflammatory bowel disease, Crohn’s disease, ulcerative colitis,” he said.
Before he became an advocate for Crohn’s disease, Hinson struggled with the disease and the fact that he had it.
“It kind of freaks you out a bit, especially being 22,” Hinson said about his diagnosis.
Crohn’s disease is a type of inflammatory bowel disease, or IBD, characterized by a chronic inflammation of the gastrointestinal tract. The disease mainly affects the end of the small intestine and the beginning of the colon, but it can also affect any other part of the gastrointestinal tract.
It causes people to use the bathroom more frequently because of how it affects bowel lining. It also causes fatigue and low energy.
Ulcerative colitis is similar to Crohn’s, but it mainly affects the colon in the large intestine. It causes the colon’s lining to become inflamed and develop ulcers. It also causes a need to use the bathroom often.
When first diagnosed with Crohn’s disease, Hinson avoided talking about the disease with people because he did not want to discuss the uncomfortable subject.
He started to accept his condition after Pearl Jam’s lead guitarist, Mike McCready, announced he had the disease in 2003. Hinson also began raising funds and spreading information about it because of McCready’s reveal and effort to raise awareness.
“It really lit a fire under my tail to kind of get out and do something,” Hinson said. “I figured if he could do something, I could do something.”
Hinson and his wife, Mandy, used to travel around the country to see Pearl Jam, and they always met up with friends before concerts.
Hinson began to use these meetings to his advantage by turning them into fund raisers.
He and some other people decided to sell their Pearl Jam memorabilia to raise funds. The first small fund raiser generated $1,000 for CCFA.
McCready and the other members of Pearl Jam found out about the fund raiser Hinson had, and they began to donate autographed items to the cause.
“They were really jazzed that we were doing it in a kind of grassroots way,” Hinson said.
After Pearl Jam began helping the cause, more and more fans joined in the effort. They eventually started pre-show parties to benefit CCFA.
What started out as a small idea grew into events that together raised more than $100,000 for the CCFA.
“Through the help of Mike and the band, we’ve really gotten the message out,” Hinson said about the Pearl Jam community helping with fund raisers and raising awareness.
Despite his success with these events, Hinson decided he had to “become an adult” after his 6-year-old son was born in 2006. He stopped working the concert scene and found ways to raise awareness locally.
“I want to do something,” Hinson said when he contacted the Tennessee chapter of CCFA in 2008. “I want to be involved in some way.”
They told him to start an education program for Crohn’s and colitis. He went to work organizing a program at Baptist Memorial Hospital-Union City, and about 90 people showed up for the program.
“They were surprised,” Hinson said. “They weren’t expecting that many people to come.”
CCFA estimates that 1.4 million people may be affected by these two diseases. According to Michelle Chianese, the education and support manager for the Tennessee chapter of CCFA, about 30,000 people in Tennessee are affected by some type of IBD.
“I think I’ve really owned my condition,” Hinson said about having the disease. “And I’m not going to let it beat me.”
He said the disease makes life harder, but people need to keep going and do the best they can.
He saw first-hand how much the disease’s effects can get in the way when his son was about 3 years old and wanted to play outside.
“You muster the energy,” Hinson said. “You get it from somewhere because it’s your child wanting to play, but you feel like crud. You feel awful, and I think that’s the one thing that’s made me the most upset about this disease is taking away my time from playing with him.”
Despite the hard times, Hinson reminds Crohn’s patients that everything will get better.
“Even though it’s an incurable disease, life goes on,” Hinson said.
He emphasized that he is not dying from the disease, and it is not considered fatal.
“I don’t want them to panic or freak out kind of like I did back in the day,” Hinson said.
He encourages people who have been diagnosed recently to learn as much as they can about the disease. He urges them to find out what treatments are offered, see which diets work best and, most of all, find support.
“Don’t try to take it on by yourself,” Hinson said. “There’s so much information out there and so many resources.”
In 2010, Hinson and his wife attended the “Take Steps for Crohn’s and Colitis” walk at Centennial Park in Nashville for the first time.
Last year, he was named the “Honored Hero” at the walk. He gave a speech and led the activities that day. He was also titled the “Volunteer of the Year” for the Tennessee chapter of CCFA in 2011.
Along with the local education programs, Hinson has organized two walks in Martin to raise awareness and funds.
On June 24, he participated in the Nashville 2012 “Take Steps for Crohn’s and Colitis” walk with his wife, Mandy, and son, Xavier.
Chattanooga and Memphis will host two other “Take Steps” walks this year. The Memphis walk is scheduled for Sept. 23 at Mud Island River Park. Check-in will start at 1:30 p.m., and the walk will kick off at 2:30.
The Chattanooga walk will be held Oct. 20 at Coolidge Park. Check-in will begin at 1 p.m., and the walk will start at 2.
For more information about the walks, go to http://online.ccfa.org/site/ Page Server?pagename=TS_ homepage, and enter Tennessee in the search category.
For other information about CCFA or the diseases, visit www.ccfa.org. Hinson may be contacted at brentmhinson @gmail.com.
Editor’s note: Katie Donaldson is an intern for The Messenger in Union City.