Like many children with arthritis, Kiyah Hall probably had the disease long before it was diagnosed. “She’d always had that forward-leaning gait you see with juvenile arthritis,” recalls her mother, Nicole. “Her joints were always bulky. Her ankles ached if she was on her feet a lot. But we never thought, ‘arthritis.’ Who imagines that their child might have something like that?”
The Halls’ pediatrician also brushed off her symptoms. But as a registered nurse practitioner, Nicole knew something was wrong. Tenosynovitis – a cyst on a tendon – developed in Kiyah’s right wrist. She had asthma, which has been shown to have a relationship with arthritis. And she’d been diagnosed with alopecia areata, an autoimmune condition that causes hair loss. “Then, I noticed that when Kiyah climbed stairs, she wasn’t using both feet evenly. And I knew – there were so many signs.”
Even so, initial tests for arthritis came back normal. “That’s because those tests look for rheumatoid arthritis, which is different from juvenile arthritis,” explains Nicole. “We needed to see a pediatric rheumatologist, and even though we had to wait for an appointment, I’m so glad we did.”
When the pediatric rheumatologist diagnosed Kiyah with polyarticular juvenile idiopathic arthritis, Nicole recalls feeling vindicated – something actually had been wrong. “But I felt guilty, too,” she says. “I remembered getting Kiyah to walk when she wanted to be carried. I remembered her grandmother telling me to get her better shoes and make her walk more, because she’d complain of ankle pain after walking. Well, of course her ankles hurt. She had arthritis. We just didn’t know it yet.”
Today, Kiyah takes about 10 different medications to control her arthritis. “Arthritis is real,” she says. “And it hurts. But I love to get out and move and do things.” Indeed, dancing is one of Kiyah’s favorite activities and the entire family has become emboldened to “do things,” to advocate for change.
“Arthritis completely impacts your life,” insists Nicole. “People have to wait weeks or months, then travel for hours just to see a doctor who knows about this disease. There are 300,000 kids in this country who have arthritis. But you have to multiply that by all the people who that impacts: parents, siblings, teachers and classmates. That’s why we must encourage physicians to become rheumatologists. We need to fund research. To educate pediatricians so they can recognize this when they see it. We have to make a difference – not only for right now, but for our children’s futures.”