The 18-year-old is in remission now, she said, but it wasn’t always that way.
Long Beach resident and Los Alamitos High School graduate Caitlin Ryan was diagnosed with systemic juvenile idiopathic arthritis at age 3. The disease crippled her throughout much of her childhood, she said, but she will ride in the 16th Annual California Coast Classic (CCC) Bike Tour this fall and needs donations.
“I had high, spiking fevers of up to 104 degrees,” Ryan said. “I was limping. My parents had to carry me everywhere.”
Arthritis and pediatric rheumatic disease affects almost 300,000 children in the U.S., according to the Arthritis Foundation’s website. Caitlin’s was rare — about 10% to 20% of those with juvenile idiopathic arthritis have a systemic type, meaning it affects the joints, liver, lungs and more, the site said.
By age 11, Caitlin’s left hip had to be replaced. And at age 12, her right hip did. Her hips crumbled at the hipbone and children would make fun of her, her mother Colleen Ryan said. She said Caitlin tried to hide it, but she missed physical education classes and walked with a limp. She also had to take medication, Colleen said, and she and Caitlin estimated there were up to 20 different types through the years — from infusions, injections and oral.
“It was difficult to see my kid suddenly become immobile and in so much pain,” Colleen said. “She played softball all those years… When sports started getting competitive, she gave up.”
Caitlin said she did dance, but it often left her sore the next day.
“When she finished a final recital and was on stage, it was such a huge victory,” Colleen said. “People didn’t realize it. It was really huge.”
Now, being in remission, Caitlin said she’s figuring out what she can participate in without too much pain.
“I’m active, but I don’t know if I’ll be in a team sport,” Caitlin said. “I bike with my dad because it’s not as hard on the joints.”
Caitlin plans to bicycle with her father, Dave Ryan, on the CCC Bike Tour from Sept. 24 to Oct. 1, stretching from San Francisco to Los Angeles. It’s about 525 miles during eight days.
But, she said, she’s starting classes this fall at California State University, Long Beach, and isn’t sure about timing and her pain level.
“It’s the third week of school so I can’t miss too much school,” Caitlin said. “I’ll stay active just by going, but I don’t know if I’ll be able to participate every day, maybe a couple days at a time.”
Dave has ridden the race for the past five years.
“We’ve been a part of the arthritis foundation many years,” he said. “We raised money for the walk (Walk to Cure Arthritis)… All of a sudden my wife noticed the ride, which had been going on for a long time.”
He said at first he refused to ride, thinking he was too fat and out of shape, but started pedaling on an old bike anyway. During his first trip, he said he wasn’t sure why he was riding, but then it hit him.
“It became my goal to sell my daughter’s story, to share it,” Dave said. “Some people think it’s just an old person’s disease. All of a sudden, they start seeing children out there. It strengthens their resolution.”
The duo must raise about $3,000 apiece to participate in this year’s CCC Tour, Dave said. And they’re not even close, he said, as they’ve just asked people for donations for the Walk to Cure Arthritis. It’s also still a little early, he said.
He and Caitlin have been training twice weekly and will add a third time soon, he said.
“She’s got a long way to go for the ride, but it’s not a race,” Dave said.
Their team is Team Princess Parade, listed under David Ryan on the CCC Bike Tour’s website. To donate and more details, visit www.californiacoastclassic.org/#about and enter his first and last name.
Emily Thornton can be reached at email@example.com.