At age 8, Allie Shute woke up in a panic, her jaws trembling in anxiety. It was the morning of her first batch of tests to find out what was causing the symptoms she’d been living with .
Now 11, Allie appears to be what most would call a typical middle schooler. Her vibrant pink shirt reflects her personality; she’s bright-eyed and energetic. Yet Allie, a sixth grader, is approaching her fourth year of a severe form of Crohn’s disease. She doesn’t outwardly show regret for her diagnosis and has easily accommodated it as part of her life. Allie has an empathy so profound that even at such a young age, she created a local support group for kids with chronic diseases, something that could be modeled in many communities.
The average age of diagnosis for Crohn’s disease is about 30 years old, according to a study in Olmsted County, Minnesota, where there are exceptionally high rates of Crohn’s disease and ulcerative colitis, a similar condition. However, recent studies have shown an increase in diagnosis of inflammatory bowel disease at younger ages. From the outside, these individuals may appear “normal.” And unfortunately, many don’t understand the depth and severity of an inflammatory bowel disease. Allie has advice for those just diagnosed and who are going through sometimes anxiety-inducing procedures: “Listen to your doctors and family, and it [the procedure] will be done before you know it,” she says. “Just think of something you like most, like something that makes you happy.”
[See: 10 Lessons From Empowered Patients.]
Allie thinks of unicorns and pugs. But she also thinks of the millions of other kids with chronic diseases she wants to connect with and support. When Allie didn’t find the support she needed, she created it for herself and other kids. She founded and now leads a chronic illness support group in her hometown so that she could find others to relate to. Allie says there are many kids with chronic conditions, but not a lot of people acknowledge it. “Everyone wants to find a cure, and I just thought I could create a group because that is something that not a lot of people talk about,” she says. “They [other kids] know exactly what I am going through.”
While there are a number of resources for people diagnosed with various chronic conditions, the person-to-person connection is still lacking. People diagnosed with a chronic condition are often afraid to openly share their experiences, which can make it difficult to find others to relate to. With the emergence of blogs, videos and sharing pictures on social media, there’s easier access to hearing others’ stories, but the in-person connection is just different, Allie says. “I was kind of disappointed when I went to some events,” she adds. “I wanted to meet other kids, but they [the Inflammatory Bowel Disease education conference] did not really have a separate room for us.”
Many kids face challenges of feeling alone, but for caretakers, it can be a journey of guilt and fear. Allie’s mother, Michelle Qualley, an elementary special education teacher, wishes she had received answers sooner. This is a common regret among patients who are diagnosed far later than they should have been. Some will be misdiagnosed for years; other doctors simply brush off symptoms and assume the patient is faking. Allie was on a couple of antibiotic courses before her mother realized she would need to take Allie’s treatment course into her own hands. “I was not even referred. I went straight to the gastroenterologist,” she says. “I knew something else was wrong and we needed answers.”
[See: 10 Questions Doctors Wish Their Patients Would Ask.]
Michelle didn’t know what to expect, but their gastroenterologist was pragmatic in her delivery. “It’s a lifelong disease,” she reinforces.
Michelle searched for answers and found resources through Crohn’s and Colitis support networks. The family’s life changed because of the diagnosis; they need to do extensive pre-planning, and their days must accommodate how Allie is feeling.
When asked about current health care debates, Michelle’s mom commented that while it won’t affect Allie as much now, she recognizes that particular changes could seriously affect her as she grows older. She’s concerned about legislation such as the Restroom Access Act, a major provision of this legislation being that private businesses must allow people with diseases such as Crohn’s disease to use the restroom. The Restroom Access Act was originally created for patients with inflammatory bowel diseases. “It makes it difficult to go out places,” Michelle says. “Will there be a restroom she can use?”
For now, Allie will continue treatment with infusions and her medication dose, which has been reduced to one pill daily. And she’ll pursue her passions of rock climbing, watching Netflix with her family and playing with slime, which she considers a stress reliever. “I just want school to start so I can see my friends,” she says.
[Read: Which Doctor Should I See for Digestive Issues?]
While little support currently exists for young adults with chronic diseases, there are emerging organizations. The Health Advocacy Summit is an advocacy event for students in high school and college with chronic diseases. The Summit aleady has a presence in various states and is conducting pilot summits in Indiana, North Carolina and Texas.
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What It’s Like to Be 11 — and Have Crohn’s Disease originally appeared on usnews.com
