Paige Kuluva, the 2016 Crohn’s & Colitis Take Steps Walk honored hero, was only 9 years old when she was diagnosed with Crohn’s disease. The 13-year-old daughter of Kerry and David Kuluva said she didn’t even realize something was wrong when she was diagnosed. It’s been a rather tough road for her, but now she’s got it under control and is helping the Mid America Chapter-Kansas City Crohn’s & Colitis Foundation of America promote its annual fundraiser, Kansas City Take Steps for Crohn’s & Colitis annual walk, set for Sunday, June 12.
The Crohn’s & Colitis Foundation of America (CCFA) is a non-profit, volunteer-driven organization whose mission is to cure Crohn’s disease and ulcerative colitis and improve the quality of life of children and adults affected by these diseases. Known collectively as inflammatory bowel diseases (IBD), these painful, chronic illnesses affect up to 1.4 million Americans, including approximately 140,000 children under the age of 18. Specifically, Crohn’s disease is a painful, incurable illness that may inflame the small and large intestines and cause diarrhea, abdominal cramps, weight loss and numerous complications such as bowel obstruction and abscesses.
Paige and her family are members of The Temple, Congregation B’nai Jehudah, where she became a Bat Mitzvah this past August. IBD is more prevalent in Jews of European descent and particularly in Ashkenazi Jews. The prevalence of IBD in Ashkenazi Jews is about twice that of Israeli-born or Sephardic Jews. The risk of developing Crohn’s disease among Jews is increased five to eightfold compared to non-Jews in the general population.
When Paige was diagnosed with Crohn’s it turned out she also had Clostridium difficile (C. diff), which has similar symptoms, but it’s very difficult to get rid of.
“I had to take many rounds of medications that had nasty side effects, and they didn’t even help it for a long time. This went on for over a year until we finally got it cleared up. This disease, like others, can affect you not only physically but emotionally, socially and mentally,” she explains.
When Paige was newly diagnosed with Crohn’s, it was often difficult for her to gather the energy to go to school.
“I wanted to go but just didn’t feel well. I often asked ‘Why me?’ or complained that I hated my life. I was grumpy when I didn’t feel well and my friends couldn’t understand why I acted this way,” Paige says.
Fighting her Crohn’s requires Paige to take medication and frequently have her blood analyzed, something she admits she doesn’t like much. She is currently being treated with Remicade, which she receives intravenously.
“When I started my Remicade infusions, it was scary and I got very frustrated when the IV didn’t work right away. Luckily, we found a nurse that usually got it on the first try and we’ve been going to her ever since! Now I’m older and used to it, but I still have to have infusions every six weeks, which take about three hours each time.”
Luckily, Paige, who is now an eighth-grade student at Harmony Middle School, says her Crohn’s is now under control and she’s felt much better the past couple years.
“I have managed to stay active, despite not always feeling well and being extra run down at times. I played volleyball, did cheer this past year and took part in the school musicals all three years of middle school. My teachers have been very supportive, which helps. Although there are still days that are tough, I have come a long way since I was first diagnosed. I feel good about all I have accomplished and will not let this disease determine my path.”
As a member of Paige’s Pals walk team, Paige says she and her family help “raise money and awareness” about the disease and she is “excited and honored” to be named the hero for this year’s walk. Paige’s Pals is currently ranked the walk’s top fundraising team for 2016 and continues to seek donations. To make a donation to Paige’s Pals, go to http://online.ccfa.org/goto/paigespals
As Pam Glickman, walk coordinator notes, there is still time to register for the walk. Go to cctakesteps.org/kansascity2016 or call Glickman at 646-457-8865. The local fundraising goal this year is $100,000.
There are now more than 40 local chapters of the Crohn’s & Colitis Foundation, which have raised and invested more than $250 million in research for cures. This funding has enabled many groundbreaking treatments, improved the quality of care for individuals with these conditions, and brought hope to countless lives.
The Crohn’s & Colitis Take Steps Walk
Date: Sunday, June 12
Location: Franklin Park
Address: Roe & Somerset. Prairie village, KS 66207
Time: Registration begins at 2 p.m.; walk starts at 3 p.m.; family friendly activities begin at 2:30
Registrations are still being accepted at cctakesteps.org/kansascity2016. For information contact Pam Glickman, walk coordinator, at or 646-457-8865.
