There's no doubt that Skylar Brown is leading a full life.
A 15-year-old freshman at Central Cambria High School, she has great friends, takes part in the forensics team, the chorus and can't wait to start up tennis lessons again.
But since Skylar was diagnosed with Crohn's disease in 2008, a full life doesn't necessary mean a normal one.
Mirror photos by Patrick Waksmunski
Skylar Brown, 15, and her mother, Carol?Crouse, both of Cambria Township, north of Ebensburg, pose with a brochure advertising their upcoming Crohn’s disease walk.
A chronic, ongoing disorder that causes inflammation of the digestive or gatrointestinal tract, Skylar's symptoms from Crohn's disease can flair up at any time. Along with severe abdominal pain, fever and the frequent need for bathroom breaks, Skylar also gets joint pain that makes physical activity very difficult. She takes 12 pills a day and regularly has to miss school or relaxing on the weekends to travel to Pittsburgh every six weeks for a Remicaide treatment.
"They say people with Crohn's can live normal lives, but I don't really think that's true, because my life is going to be a lot different than how [anyone else's] is because I have different issues," said Skylar while sitting at the table in her home in Ebensburg. "I don't really believe you live a normal life.
"It's something you get accustomed to, but it's not normal."
Skylar hasn't let feeling different stop her from being active, though - at home, in school or in the fight against Crohn's disease. She has been actively encouraging friends and family to help raise money for Altoona's first Crohn's & Colitis Foundation Take Steps Walk, which will take place at 3 p.m. Sunday in Legion Park in Hollidaysburg. Skylar will be the walk's "honored hero."
The title was bestowed upon Skylar by officials from the Crohn's & Colitis Foundation of America. They became familiar with her after she started attending a camp sponsored by the foundation a few years ago. Being able to connect with kids with similar problems helped Skylar be more upfront about the disease and "take ownership," said her mom, Carol Crouse.
"The first time she went, as soon as she came out of the van, she said, 'I'm going again next year,'" Crouse said.
But among people who don't know about Crohn's disease, Skylar has to deal with things that make her feel different. She has to leave early from class, can't carry books home and her tired, heavy joints keep her from playing soccer, her favorite sport.
With no visible symptoms, it's even harder for people to understand this chronic condition, Carol said.
"With the Crohn's, it's not a physical disability where people can look and say 'Oh, there's something wrong,'" she added.
Dr. Ralph McKibben, the director of the inflammatory bowel disease management program with Blair Gastroenterology Associates, said individuals who suffer from inflammatory bowel symptoms have a "significantly decreased quality of life - more so than diabetes and heart disease."
"It impacts daily life, your quality of life and your ability to participate in life," he said.
Crohn's and colitis affect 1.4 million people nationwide, and McKibben estimates that Blair Gastro treats about 1,500 patients in western Pennsylvania. He said it's events like the Take Steps Walk that can both create a community, disseminate important treatment information and provide hope for a cure.
"This walk that we're having is the first step in what we hope is a longer journey of bringing in outside resources and letting people know they're not alone," McKibben said.
Both Skylar and Carol hope the walk will help spread awareness. Many locals have helped make it a success, and Skylar is already making plans for fundraisers to hold after this weekend. She said it feels good to have "actually done something about it," adding that living with Crohn's disease has "changed my outlook on life."
"It makes me not complain about things as much," Skylar said. "Whenever I used to get a cold and stuff, I'd be like, 'This is terrible.' But now it's not really anything. I don't really complain about the small things any more."
Carol said it has made her appreciate what they do have, and though Skylar may sometimes feel different, there's still plenty of room for her to keep living her full life.
"I take my cue from her because she's the one who has to live with it and deal with it," Carol said. "I think because of how old she is, she handles it. She takes it in stride."
Mirror Staff Writer Beth Ann Downey is at 946-7520.