Families of Children with Juvenile Arthritis Deal with
Emotional Ups, Downs of Unpredictable Disease
Katalin Lucas describes it as the “hope wagon.”
For children with arthritis and their families the “hope wagon” is the psychological ride they’re on each time they try a new treatment in the battle against arthritis, Lucas said.
That wagon ride is tough and the journey can be long.
Taylor Lucas, 10, was diagnosed with juvenile idiopathic arthritis in 2010 at age six and a half. “We try to allow her to live as normal a life as possible, Lucas said. But behind closed doors, she added, her daughter endures physical and emotional arthritis pain. “She doesn’t want to admit to pain,” Lucas said of Taylor. “She wants to be more like her peers. We find out (about Taylor’s pain) later.”
Arthritis is an “unpredictable disease that is hidden right below the surface,” Lucas said. “No one challenge is the same.”
And Taylor’s challenges have been many. After starting treatment with non-steroidal anti-inflammatory drugs, the disease-modifying drug (DMARD) methotrexate was discontinued due to its side effects. Steroids followed. Today Taylor receives a weekly injection of adalimumab, a biologic drug. Drug infusion therapy may come next. That decision has not been made.
And Lucas said Taylor may be facing jaw joint replacement surgery. She has jaw erosion due to arthritis. The jaw is the “most silently affected joint,” Lucas said.
So Lucas is raising her hand and her voice to advocate for children with JA and their families.
“We are really trying to give Taylor the tools to advocate for herself. It’s so important to not feel alone,” Lucas said. The family has participated in the Cleveland Arthritis Walk (raising more than $2,600 this year) and they have been outspoken advocates of more research to find a cure.
Arthritis awareness for children can begin at school where the entire school community knows that a child like Taylor has arthritis, Lucas said. But the disease often is frustrating as family still has misconceptions about arthritis and too many people still describe arthritis as “just aches and pains.”
Lucas, who created a video about Taylor’s arthritis journey, said her daughter enjoys artwork, crafts and reading. Like so many other families of children with arthritis, Lucas said she is determined to help Taylor know that arthritis doesn’t define her.
Recently Taylor decorated a small wooden jewelry box (pictured below). In glitter she wrote, “I will stand. I have JIA.”
The ride on the “hope wagon” may have just gotten a bit smoother.