West, an NFL star running back, and Reid, a little girl, grapple with symptoms and treatment of the same life-altering illness, juvenile rheumatoid arthritis.
What do a 25-year-old NFL star and 10-year-old girl have in common? Quite a lot, in the case of Kansas City Chiefs running back Charcandrick West and fourth grader Jillian Reid. Both have juvenile rheumatoid arthritis, an autoimmune disease that damages joints, leaving them swollen, stiff, and painful.
Charcandrick was 14, a freshman and a rising star on his high school football team in Shreveport, La., when he awoke one morning with a high fever, splotchy red rash, and severe joint pain. Doctors had several theories about the cause — including Lyme disease — but offered no real answers.
It took two years of painful tests for doctors to finally figure out what was wrong with him. “I bounced around from hospital to hospital… and we couldn’t find out what was going on,” he says. “Who would have thought a 14-year-old kid would have arthritis?”
Jillian, who lives in Kansas City, Mo., was just six years old when her first symptoms appeared. “I remember falling off the couch,” she says. “I went to my mom and I said, ‘My knees hurt.’” Her parents took her to the pediatrician to treat what they thought was an injury. The doctor immediately noticed swelling in her knees and ankles — a telltale sign of arthritis. Within a few weeks a rheumatologist had confirmed the diagnosis.
“When my dad told me I had arthritis, I’m like, ‘What in the world is that?’” she says. “I got scared when I found out what it was and it might attack my joints. I thought it would damage my joints and I wouldn’t be able to move.”
Charcandrick feared his disease would put an end to his dreams. “I remember the doctor telling me I wasn’t going to play football again,” he recalls. “To tell a kid you can’t live out your dream is kind of a depressing moment.” The doctor went even further, saying he might never walk again.
Life with juvenile rheumatoid arthritis
To manage juvenile rheumatoid arthritis, doctors have to stop the attack on the joints and bring down inflammation. This usually involves medicines like disease-modifying antirheumatic drugs (DMARDs) and biologics, which dampen the overactive immune system response. Many of these drugs come with side effects, and some require constant injections.
“That was the hardest part for me,” Charcandrick says. “I’m terrified of needles. I had to give myself a shot every morning.”
Jillian has learned how to manage the injections of infliximab (Remicade), an immune-suppressing medication, but she still hasn’t gotten used to the methotrexate and other pills she has to take. “Most of them make my stomach hurt…. Sometimes I try to skip them if I can because I don’t like it.”
Complicating matters is that, on top of her arthritis, Jillian also has another autoimmune condition called Crohn’s disease. Crohn’s inflames the intestinal lining and causes uncomfortable GI symptoms like stomach cramps and diarrhea. It also requires its own medication regimen. “I have to take a lot more pills, and a lot more treatments. I get blood draws every six weeks,” she says.
What is it like to live with a chronic illness? “Probably the hardest thing is knowing I’m not going to be like a normal child, and there’s not a cure,” Jillian says.
One place where she feels more normal is at the Arthritis Foundation camp Joint Adventure, which was created specifically for kids like her with juvenile rheumatoid arthritis. “It was just so fun. I met four friends with different kinds of arthritis.”
Juvenile rheumatoid arthritis forced Charcandrick to temporarily put his football dreams on hold, but he wasn’t about to give them up. He met with a rheumatologist, started on the right treatment, and finally got his condition under control. When he returned to football during his sophomore year in high school, he quickly made up for lost time. He worked out hard and played even harder. Within a year, he was fielding offers from Division I colleges.
Body of steel
After living with juvenile rheumatoid arthritis for several years, Charcandrick and Jillian learned the importance of raising awareness — and money — for their condition. Jillian has raised thousands of dollars, setting up her own lemonade stand, soliciting friends for donations, and participating in the Arthritis Foundation’s Jingle Bell Run. Charcandrick has set up his own foundation, which is fittingly named No Dream is Too Big.
Recently, the two joined forces with Singing for Superheroes, an organization that helps empower kids with serious illnesses. They collaborated on the song and music video, “Body of Steel” to raise awareness for juvenile rheumatoid arthritis.
Though they come from different backgrounds and are more than a decade apart in age, Charcandrick and Jillian quickly discovered they share a common purpose. “We need to get people really aware of arthritis and raise some money to find a cure, so kids won’t have to go through what we’ve been through,” Charcandrick says.
“So if other kids get arthritis, boom — it’s gone,” Jillian adds.
August 23, 2018
Christopher Nystuen, MD, MBA