It was a Sunday evening in January 2020 when Mary Brasier said she noticed her daughter, Ella, who was 20 months old at the time, kept falling on the kitchen floor.
Brasier said she chalked it up to toddler clumsiness and pajama pants that were too long. The next morning, Brasier saw that Ella’s left knee was significantly swollen and knew something wasn’t right.
“We didn’t know if she had fallen, if she had fractured something, and we went into the emergency room,” Brasier said. “Imaging didn’t come back with any sort of fracture; there was nothing on the X-ray. From there, we were referred to oncology, which was scary. The most common disease that juvenile arthritis is confused with is leukemia at first.”
After many tests and doctor’s visits, it was determined that the swelling, redness and stiffness in Ella’s knees were due to juvenile idiopathic arthritis (JIA).
The disease affects about 300,000 children in Missouri, according to Delores Hardwick, executive director of the central west region of the Arthritis Foundation.
Brad Ornstein, a pediatric rheumatology physician at St. Louis Children’s Hospital, said there is no single test to diagnose a child with JIA. He said JIA is caused by the immune system attacking the body’s joints.
“In pediatric rheumatology, (JIA) is probably the most common thing that we see,” Ornstein said. “We don’t really use the terminology of ‘curing’ JIA. If we get it under control, you might actually be able to get off of medication and you might never need it again, but it can always come back.”
Brasier, who lives in Pacific, said she’s raising money for the Arthritis Foundation’s annual Walk to Cure Arthritis to bring awareness of JIA. She said not many people know that children can suffer from arthritis and more research into the juvenile disease is needed.
“It just doesn’t really get the acknowledgment or dedication or attention that I think it should have,” Brasier said. “When we don’t have the proper amount of awareness and attention and resources, it’s hard for them to ever find a cure.”
The Walk to Cure Arthritis will be held at 5 p.m. Friday, April 19, at Logan University in Chesterfield. Hardwick said participation in the walk is free, and those who raise $100 or more for the foundation will receive a T-shirt. She said about 400 people participate in the walk every year.
Hardwick said the walk is a chance for those with arthritis to connect with and support others.
“We really like to take that as an opportunity to honor our arthritis warriors and we like to bring recognition to their stories and their testimonies, so hopefully they can kind of be an inspiration to those who are newly diagnosed or on this journey and need support throughout the process,” she said.
Managing arthritis
Brasier said Ella is on medication to treat the pain in her joints, and she’s an active and happy 5-year-old. Arthritis has never held Ella back, Brasier said.
“We’re very fortunate,” Brasier said. “We don’t have it anywhere near as bad as it could be. For some kids, it breaks up their entire life. They miss school and sports and sleepovers and things like that.”
Ornstein said with today’s advancements in medication, children with JIA should be able to live a relatively normal life. However, he said, managing the disease is not always easy. He said a child’s life can be disrupted by numerous doctor appointments, blood draws and tests.
But left untreated, Ornstein said JIA can destroy joints and lead to joint replacements.
“Even though we are getting pretty good at treating it, there are still periods where kids will have struggles,” Ornstein said. “They will have discomfort. They might have to miss school for extra (doctor) visits or extra treatment. I think it’s just good to keep other people in mind when you see someone when they’re having a bad day or a flare-up. It’s not always rainbows and roses, for sure.”
Brasier said Ella takes medication every other day to treat her arthritis. She said the medication is great in reducing joint inflammation, but Ella does experience some adverse reactions, including an upset stomach and loss of appetite.
“These medications are horrible, but you can’t go unmedicated because the joints will literally deteriorate and break down and cause permanent damage,” Brasier said. “It’s like, pick your poison.”
More research needed
Hardwick said organizers hope to raise $50,000 through this year’s walk. She said donations will be used to boost arthritis research, community education and fund support groups for those with arthritis.
“We want to raise more awareness and get people to understand the importance of educating the community and getting people involved,” Hardwick said.
Ornstein said while there’s a lot of research being done on the types of arthritis affecting adults, such as rheumatoid arthritis and osteoarthritis, research in JIA is limited.
“There’s a fair amount of research that is done, and I think pediatric disorders in general are almost always going to be well behind adult disorders,” he said. “One reason is just broad numbers – there are more adults than there are children. I think the other part, too, is with very good reason, a lot of parents are hesitant to enroll their kids in clinical trials or to kind of make them test subjects.”
Brasier said she began raising money for the Arthritis Foundation in 2021. Because of the COVID-19 pandemic, this is the first year that Brasier, Ella, and her 3-year-old son, Hudson, will be able to participate in the Walk to Cure Arthritis in person.
“We’re excited to finally be able to walk with everyone,” Brasier said.
Hardwick said those looking to participate can register individually or as part of a team.
For information on the walk and how to register, go to events.arthritis.org.