According to the Centers for Disease Control and Prevention, an estimated 220,000 children and adolescents had a diagnosis of arthritis between 2017 and 2021. The prevalence was highest in young people between the ages of 12 and 17 and non-Hispanic Black children and adolescents (twice that of their non-Hispanic white peers). Anxiety, depression, overweight, physical inactivity and food insecurity were also factors associated with arthritis.
But juvenile arthritis (JA) can happen to any kid. Ahead, three families open up about their experiences, from getting a diagnosis to managing pain to dealing with negative comments and medical setbacks.
'I had sharp, stabbing pain that hurt to walk'
When Will Farris was 9, he experienced knee pain in the morning and during soccer. His parents took him to different providers to figure out why. An injury, perhaps?
His mother, Ginna, remembers that one doctor was concerned enough to call different hospitals in North Carolina, where they live. “He told me he was calling Duke, [WakeMed] and Chapel Hill, and whoever could get him in the quickest is who we would go to,” she tells Yahoo Life.
Will underwent labs and testing and had swollen areas of his body measured until he finally received his diagnosis: juvenile rheumatoid arthritis.
“My heart sank to my feet," Ginna says of getting the news. "I tried not to let it show in front of him and waited to cry when I was all by myself. I only had one day of crying — my personal 'pity party' — and decided that with my family’s faith in God, and an outstanding group of doctors and staff at Wake, that nothing was ever going to stop Will.”
Will, who is now 22, doesn’t remember much from that time other than the physical pain. “I had sharp, stabbing pain that hurt to walk,” he remembers. “I just wanted the pain to go away so I could play soccer without hurting.” He recalls thinking that he might have cancer or a broken bone. "I hurt all of the time."
He’s had his fair share of obstacles, but found a way to push through. While he needed more breaks during games, he still played three sports: baseball, soccer and tennis. When the weight of a backpack hurt his shoulders, he got a doctor’s note allowing him to have a rolling book bag. He says his teachers and coaches were supportive.
Ginna still worries, naturally, but that doesn’t take away from her pride. “I wouldn’t be a good mother if I didn’t have concerns as he grows older with rheumatoid arthritis,” she says. But with a combination of avoiding trigger foods, staying active and taking the anti-inflammatory drug meloxicam as needed, she says her son is managing. “People are amazed [at] how well he is doing compared to his younger years," she adds.
Will wants people to know some days have more obstacles than others. “You literally never know what tomorrow will hold, with living with arthritis," he says.
'I have to take pills every day. I wish I didn’t have to.'
After playing with her sisters one day, then-toddler Shelby Owen landed in the ER with an injury. She was diagnosed with a hyperextended joint, but then her condition deteriorated. “Shelby had completely stopped walking,” her mother, Alyssa, tells Yahoo Life.
After seeing a doctor at Shriners Children's Greenville in South Carolina, Shelby received a diagnosis of arthritis. Alyssa felt blindsided. “I had no clue what juvenile arthritis was,” she says. “I didn’t understand that we were on a years-long journey, potentially for the rest of her life, to manage a chronic and at times debilitating condition.”
Over the years, Shelby, now 11, has taken steroid injections and worn ankle foot orthotics (or, as she calls them, "magic boots"). She’s gone through physical therapy and taken medicine that made her sick for a year. One medication that their insurance company initially refused to cover cost $8,000 per dose; Shelby would need two doses a month. "There was no way to move forward with that,” Alyssa says. “We just had to wait until the insurance company reversed their decision.”
Shelby says she feels pain in her knees, heels and other parts of her body, and has struggled with her treatment. “I used to be afraid when they would take my blood,” she says. Now she gets a weekly shot. “It makes me unhappy to take my shot," she tells Yahoo Life. "I have to take pills every day. I wish I didn’t have to.”
Juvenile rheumatoid arthritis affects not only her health but her life too. “Things like tying shoes and doing buttons and snaps were very, very difficult for her,” Alyssa says. “Even things like learning to write and color were affected by her condition.” This affected Shelby's homeschooling, so her parents held her back a year. There have also been negative comments.
“When Shelby was a toddler and couldn’t walk because the arthritis was so bad, people would comment all the time in public about her ‘being old enough to walk,’” Alyssa says. “Regardless of how gently or graciously I tried to reply, a lot of times they would get an attitude and say things like, ‘Well, I didn’t know!’” (These days, Shelby struggles less with mobility.)
Despite all that the family has gone through, Alyssa feels grateful. “We are very, very lucky,” she says. “There are treatment options, and she leads a fairly normal life.”
'I can do cartwheels and handstands and backflips in the pool, and arthritis does not stop me'
When Nicoletta Rocco was about 18 months old, her knee swelled up and she struggled to walk. Her mother remembers her resourcefulness. “She started using her little grocery cart to walk around,” Providenza, who is based in Pennsylvania, tells Yahoo Life.
But Providenza remembers the anxiety she felt too. “It was clear this wasn’t a bump or bruise that would go away,” she says. “The swelling was warm and totally distorting the way she would walk and stand.”
After long days in the ER, many tests and several appointments, doctors diagnosed Nicoletta with polyarticular juvenile arthritis. But many questions remained. “The doctors were kind, but they talked fast,” Providenza says. “They wanted to start her on drugs that had black box warnings [with serious side effects].”
Understandably, this concerned her. “I questioned whether this was the best treatment for such a little kiddo,” she recounts. “Don’t I want what is best for my baby? Yes, of course, but I needed a moment.”
They ended up trying several drugs and a couple of doctors before finding the right one. Nicoletta also had to get fluid pulled from her knees and take eye drops for uveitis, a complication of JA.
Now 7, Nicoletta doesn’t remember the diagnosis process, but she remembers some of the medical procedures — particularly shots and bloodwork. “When I get those, it hurt a lot, but now I am used to it, and it does not hurt anymore,” she says.
She doesn’t like long waits in the doctor’s office, but she says arthritis is only “sometimes” hard for her to manage. “I can do cartwheels and headstands and backflips in the pool, and arthritis does not stop me," she says.
While Nicoletta doesn’t get comments from others on her disease, Providenza does. Most contain an element of curiosity. For example, people say, “I did not know babies/kids could have arthritis!” and ask “What is that?” often. She doesn’t find pity helpful — even when it’s well-meaning — but she understands that people don't always know what to say.
When Nicoletta has flare-ups, she feels it in her hands, ankles, knees and feet, Providenza says. “Nic has an IEP [individualized education plan] just in case she has a flare-up, but her arthritis is controlled right now, and she has not had a flare in over a year.”
What an expert says about juvenile arthritis
What juvenile arthritis entails will vary. “Several different types of arthritis can develop in childhood; most are treatable,” says Dr. Kathryn Dao, an associate professor in the division of rheumatology at the University of Texas Southwestern Medical Center in Dallas. She lists family history of arthritis or autoimmune diseases, injuries, trauma to the joint and infections as risk factors.
According to the CDC, symptoms include:
Loss of appetite
Difficulty with daily activities such as walking, dressing and playing
Treatment mostly depends on the type. “For inflammatory arthritis, anti-inflammatory or disease-modifying, antirheumatic drugs or biologics may be needed to stop inflammation and prevent further damage,” Dao explains. “For mechanic arthritis or traumatic arthritis, rest, ice, acetaminophen, nonsteroid anti-inflammatory drugs [NSAIDs] or topical analgesics may be useful to manage the pain.” All forms can benefit from physical therapy, she continues, saying it reduces pain, improves function and increases mobility.
While juvenile arthritis comes with many obstacles — as illustrated above — there is hope. “Most juvenile arthritides are self-limited, meaning they will improve with time,” Dao says.