Overcoming a painful disease: Battling juvenile arthritis is a long-term proposition for this fourth-grader
Nora Powers started feeling pain in her feet when she was 2 years old.
That led to trips to her pediatrician, then a podiatrist, then an orthopedist. When she was 5, a pediatric rheumatologist diagnosed what caused her pain and also her swollen fingers: juvenile arthritis.
Since its cause is unknown, it is technically called juvenile idiopathic arthritis.
Nora, now 9 and in the fourth grade in the East Syracuse Minoa school district, has been seeing that rheumatologist, William Hannan, MD, ever since. Hannan and his colleague, Caitlin Sgarlat Deluca, DO, treat juvenile arthritis and related conditions at the Upstate Pediatric Rheumatology Center, the only place for specialized treatment between Rochester and Albany.
“‘Arthritis means joint inflammation, and everyone thinks of it as something their parents and grandparents might get, but juvenile arthritis has been around, too. It is one of the more chronic diseases of childhood, but it doesn‘t have the reputation of other chronic diseases,” Hannan says.
It‘s hard to diagnose, since it requires lengthy observation and a detailed evaluation that rules out other causes. The disease can go on for some time before it is identified, as in Nora‘s case, and it comes in many types and degrees of severity.
“The most difficult thing for families to adjust to is that this is a chronic disease,” Hannan notes. “It is a slow process. They live through it, and it takes a while to get them really feeling good. They‘re likely to be on medications for years. That is the most difficult thing for families to deal with.”
Nora has taken medications to reduce her pain and inflammation, including methotrexate, which she is now being weaned from as her symptoms are in remission.
Since movement is generally recommended, Nora has been as active as possible with soccer, dance and yoga for years, says her mother, April McCaslin of East Syracuse.
“We noticed she used to have to take several breaks, but when the methotrexate started working, she was able to run up and down the (soccer) field without having to stop and struggle with it,” McCaslin says.
Nora has permission to opt out of gym class or other school activities, but she rarely does.
“When we go to the floor (for a school activity), I usually sit in a chair because it hurts my legs to sit on the floor,” Nora says, noting her chair has a cushion to make it more comfortable. She might also write a school assignment on her Chromebook computer if writing by hand is too painful.
If she needs to explain her illness to people, she says, “I tell them that it hurts your joints” and notes the disease doesn‘t slow her down too much.
She used to have physical and occupational therapy at school but has been doing so well recently that she doesn‘t have to leave class anymore, her mother says, noting that the school has gone “above and beyond” to accommodate Nora‘s special needs.
Since Nora doesn‘t like to complain, McCaslin is ever vigilant about the disease, which can give Nora painful “flares” or leave her tired at the end of a school day. Nora also must see an eye doctor regularly to watch for a possible problem called inflammatory uveitis. Down the road, she will probably need extra time once she gets to middle school and has to switch rooms for each class.
She rarely uses it, but Nora has a wheelchair in case she needs to walk a long distance, such as on school field trips.
Nora and her family advocate for juvenile arthritis, including sponsoring the Nora‘s Flower Powers team each year since 2014 in the Arthritis Foundation‘s annual Jingle Bell Run fundraiser, raising more than $18,000 in all, her mother says. Participants can walk or run, and sometimes Nora runs.
On the team‘s Facebook page, you can read about Nora and her mother meeting with a state senator about a health insurance bill, see their volunteer work for the Arthritis Foundation, find messages of support from Nora‘s stepfather, Mason McCaslin, and many other people, and check out photos of children with signs that say, “Kids Get Arthritis, Too.”
“She looks like a perfectly normal child, so you‘d never guess she was in pain,” her mother says.
“Everyone would look at her and say she‘s a normal 9-year-old,” Hannan agrees. As she tapers off her medication, her arthritis “may be gone or may start to come back. I wish I could predict exactly what was going to happen, but nobody can,” he says.
Speaking of all his juvenile arthritis patients, Hannan says, “My goal is to make them normal: to go to school, get married, have kids.” The treatments and outcomes for juvenile arthritis patients are much better now than when he started in the field in the 1980s, he notes optimistically.
About childhood arthritis
Considered the most common form of juvenile arthritis, juvenile idiopathic arthritis, or JIA, begins before age 16 and involves swelling in one or more joints lasting at least six weeks.
JIA includes several types of arthritis and was previously known as juvenile rheumatoid arthritis. It is different in most cases from adult rheumatoid arthritis.
JIA may include muscle and soft-tissue tightening, bone erosion, joint misalignment and changes in growth patterns, and the symptoms can change from day to day.
Diagnosis is based on a physical exam as well as lab tests and medical history.
Several arthritis-related diseases can also affect children, such as Kawasaki‘s disease, juvenile scleroderma, juvenile lupus and fibromyalgia.
This article appears in the winter 2018 issue of Upstate Health magazine.