If her friends or family are doing something that looks like fun, chances are that 10-year-old Brynn Swank will want to give it a try.
Never mind the fact that at 18 months old she was diagnosed with juvenile rheumatoid arthritis.
“Sometimes I’m in pain, but I want to do stuff so I say I’m not,” Brynn admits. Cold weather “bothers” her, she said.
Her petite 4-foot-2½-inch frame and unusual gait when she runs sometimes brings attention to the fact that she suffers from the disease. Growth is sometimes stunted in juvenile arthritis patients because the disease can affect bones and steroids can also interfere with growth, according to medical experts.
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Two years ago, Brynn decided to take up BMX bike racing because it looked like her cousins and siblings were having fun doing it.
“It made me nervous,” said her mom Lori Swank, who noted that her daughter is still fragile despite her illness being controlled by injections. “But she likes it.”
This past summer, Brynn played softball because a friend was on the team. And for the past six years, she’s been doing cheerleading, one of her favorite things to do.
She realizes she has limitations. She once shattered one ankle and broke the other one running up concrete steps.
“I want to do soccer but I can’t because of my feet,” she said. “And I can’t do basketball because I’m really short. I also want to play volleyball with my best friend but I can’t because of my feet and wrists.”
A prevalent disease
More than 300,000 children in the U.S. have some form of juvenile arthritis, with nearly 3,000 diagnosed in Kansas alone, according to Valerie Fairchild, program director for the Heartland Region of the Arthritis Foundation.
It is one of the most common childhood diseases in the U.S. — it is more common than cystic fibrosis, sickle cell anemia and muscular dystrophy combined, Fairchild said.
Medical textbooks cite more than 100 forms of juvenile arthritis, according to Nancy Olson, one of Kansas’ two pediatric rheumatologists, who sees patients in the Kansas City and Wichita areas. Some forms show up in babies only a few months old while others don’t show up until a child is in their teens.
The disease can be controlled with medication and sometimes it can go into remission, allowing them to be active in sports or other physical activities. The disease is treated with a variety of drugs that include steroids, antibiotics and drugs that limit the inflammation or the progression of joint damage.
“It depends on what’s meaningful for their life and what they are willing to do,” said Olson, about the varying levels of activities for kids with juvenile arthritis.
Hurt to be touched
Ashley Matthews remembers a time when it hurt to be touched.
At age 5, she’d have to find ways — using a nearby piece of furniture or even the collar of her dog — to pull herself off the floor. She remembers how weak and tight her muscles felt, and how painful it was when her parents grabbed her under her arms to help her up. If she dropped a toy or pencil, she couldn’t bend over to pick it up.
Something was causing inflammation in her tiny body and limiting Ashley’s mobility.
Throughout seven months, her mother Sherry Matthews recalls, doctors tested her little girl for Lyme disease and did spinal taps and other tests to rule out muscular dystrophy.
They considered that a possible, undiagnosed strep infection may have wreaked havoc on her immune system.
After Matthews heard Carol Lindsley, the other pediatric rheumatologist in Kansas, speak during a lecture in Wichita and after talking to a parent whose child had similar symptoms, she started to think her daughter had some form of juvenile arthritis.
A visit to Lindsley in her Kansas City-area office confirmed the diagnosis in not only Ashley but in her twin sister, Emily, as well. By the time Sherry Matthews and her husband, Scott, had made an appointment with Lindsley, Emily was showing signs of mobility limitations, too.
According to the Arthritis Foundation, juvenile arthritis is an umbrella term to describe the many autoimmune and inflammatory conditions that can strike children 18 or younger. While arthritis typically involves joint inflammation, juvenile arthritis conditions also can affect a child’s eyes, skin and other organs.
Ashley and Emily were diagnosed with dermatomyositis, which causes skin rashes and weak muscles.
Between 3,000 to 5,000 children in the U.S. have this form of juvenile arthritis, according to the Arthritis Foundation. According to medical experts, the cause of the condition is inflammation in the blood vessels under the skin and muscles.
Weak muscles were the primary manifestation of the disease in the sisters, Sherry Matthews says. Eleven years after their diagnosis, Emily is now in remission without medication — and has been for the past two years. Ashley has never really gone into remission and still continues physical therapy once a week, along with taking a regiment of drugs that reduce the pain and inflammation caused by her disease.
Living with the disease
Besides the pain, there are other issues a child with juvenile arthritis has to deal with. Finding the right medication can sometimes mean trial and error.
When Brynn Swank was diagnosed with juvenile arthritis, Lori Swank remembers having to crush pills to add to her daughter’s juice because she couldn’t swallow the pills.
Then Swank would have to make sure that Brynn drank the juice to get the entire dosage. As Brynn got older, she couldn’t tolerate some of the meds and had to be switched to injections, which the youngster despises.
Patients have to be monitored to ensure they don’t suffer side effects from medication. The Matthews twins see an ophthalmologist to ensure their eyesight hasn’t been affected by the drugs.
A risk of glaucoma and cataracts are among the long-term side effects of prednisone, a common drug used to treat the disease.
Ashley Matthews remembers being teased in elementary school when the prednisone steroid caused her to look swollen and puffy, another of the drug’s side effects.
Yet, children with the disease — like Brynn Swank — can live active lives.
For Ashley Matthews, she’s found another way to live with the disease — by thinking more positively and challenging herself and finding confidence in her abilities. As a freshman at East High, she took the elevator between the school’s three floors because stairs were fatiguing and she feared she might fall.
In her sophomore year, she challenged herself to use the stairs instead.
“And I did it,” she said. “I built strength and I was so happy.”
That’s also the year she became the head photographer for the yearbook and newspaper at East High. Following and photographing the action on the courts and fields means getting in some physical activity, as well. Plus she loves the social aspect of feeling part of school activities with her photography and capturing meaningful moments for other students, she said.
This summer, for the first time in five years, she said, in the days leading up to a church mission trip, she didn’t worry about how she’d manage.
When Matthews, who plans to become a veterinarian, took a job at a vet’s office, she decided she would try to lift animals if she was able, and if not, she’d ask for help.
“Anything that’s thrown my way is a lesson and I learn from it,” she said.