School can be hard enough for kids without a serious and embarrassing disease to deal with.
Among the 1.6 million Americans with the bowel disease ulcerative colitis, 80,000 of them are children.
Channel 9′s Scott Wickersham spoke with one young woman who is working to give those children a voice.
Twenty-one-year-old Carley Keller was an athletic cheerleader in the 8th grade when she started feeling weak and tired. She said she could hardly make it through school days, and most foods made her sick.
“I was probably going to the bathroom 25 times a day and waking up in the middle of the night,” Keller said.
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During a competition, Keller said things got worse.
“At the end of the routine, I almost passed out. My mom said something was wrong. I was also pale, and I had lost a lot of weight,” Keller explained.
After a battery of testing, Keller said she was diagnosed with ulcerative colitis, which causes inflammation and ulcers in the digestive tract. While being treated, Keller learned about a valuable support option.
Section 504 of the Rehabilitation Act of 1973 says schools have to accommodate students’ disabilities, mental or physical.
Keller was then granted unlimited bathroom breaks, sick days, days off for getting infusions, and extra time for testing.
“It allows the school to be educated on what the condition is and how they can accommodate the child,” Keller elaborated.
Siera Lindo, clinical social worker at Levine Children’s Specialty Center, advocates for kids who need consideration for things such as learning disabilities, anxiety, diabetes, epilepsy, asthma, food allergies, and irritable bowel diseases.
“It can be overwhelming for a child, so for the school to be aware is helpful. Some people are really shy about asking to use the bathroom. We can advocate for a private restroom or access to the nurse’s office,” Lindo said.
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Keller said her experience led her to launch the junior board of the Crohn’s and Colitis Foundation of the Carolinas. So children dealing with the disease have someone to talk to other than adults.
“Having a resource that someone closer to their age, who understands what they are going through with school and friends, and that stuff,” Keller explained.
Now a senior at Appalachian State University, Keller said her health has made a turnaround, and she’s back to enjoying the simple things in life again.
“I’m great. I’ve been in remission since 2018. I can eat whatever I want,” Keller said.
The Crohn’s and Colitis Foundation of the Carolinas is honoring Keller and her family at their Night of the Town fundraiser Friday night for her work to educate and bring awareness to the disease.
VIDEO: 13-year-old from Charlotte becomes ambassador for kids battling Crohn’s disease
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