ABC7 News anchor Cheryl Jennings had a chance to learn more about this painful illness, thanks to the Taylor Family Foundation, which hosted a camp for children with arthritis.
Music therapy is the newest fun and creative way to help children who live with a life-long disease. They all have a form of arthritis, which was a shocking diagnosis for them and their families.
"I always thought that it was only for old people, for some reason. But now that I have it, now I see all these kids that have arthritis. So, it's kind of, like, changed my mind," Daniel Camacho of Daly City.
"My arthritis was really bad when I was young but it's gotten a lot better," said Lindsey Fredericks of Los Gatos.
"We found out that it was lupus. Lupus is like a different version of arthritis," said Shalimar McGinnis of Morgan Hill.
"I would say arthritis is, just in its simplest form, inflammation of the joint. And that could include swelling. That could include redness," said Lucile Packard pediatrics rheumatologist Dr. Nina Washington.
The children are among a growing number of young people who are finding their way to a free summer camp provided by the Taylor Family Foundation in Livermore, Calif. Each camp is individually designed for the children's special needs.
"We work closely with the doctors, the nurses, the counselors, the camp directors and we huddle, and we meet. And we talk about what does their camp look like for the best experience," said Executive Director of the Taylor Family Foundation Angie Carmignani.
The name of the camp is Milagros which is Spanish for miracles. It's the only camp in Northern California designed for children ages 8-13, with juvenile arthritis and related auto-immune disorders.
The motto of the camp is "Kids get Arthritis too." And the numbers are staggering. Three-thousand kids in the Bay Area, 38,000 in California and nearly 300,000 across the rest of the country are affected. And those are just the reported cases.
"Girls are affected more than boys. We usually see about two-thirds girls, one-third boys. I don't think they know why yet. No, we're still looking for a cause and we're still looking for a cure," said Emma Davis of the Camp Milagros Arthritis Foundation.
"In basketball, when I jump it hurts my knees and sometimes when I shoot, my elbow just hurts," said Camacho.
He started showing symptoms when he was 3-years-old, but nobody thought to look for arthritis. He started limping as he got older and was finally diagnosed two years ago by a specialist.
Fredericks, 13, was diagnosed with systemic arthritis when she was 3-years-old. But it took time to figure it out.
"For a while, they thought that I had like bone tumors or leukemia. So, it was really scary for my parents," she said.
The kids share information at Camp Milagros about medications, injections and sad stories from outside camp; because they can't keep up with school activities or because they look different.
Asked what happens if she doesn't take her medicine, McGinnis said, "Well, usually my joints will hurt a little bit. Like, if I write or something, it might hurt here. Or my face might get like, really red and puffy."
"Bullying is really challenging and a lot of our children face bullying on a daily basis," said University of California, San Francisco pediatric nurse practioner Tara Valcarcel.
"I was so scared that they might make fun of me. So I just never said it," said Camacho.
When Camacho was asked what he wanted kids to know now about his disease, he said, "that it's really hard. It's a really hard disease and you shouldn't make, you shouldn't make fun of people that have it."
"I think if it was more out in the public, like cancer, I think there could be more fundraising and they could raise more money to be able to find a cure for arthritis, so that kids like us don't have to live with it," said Fredericks.
At Camp Milagros, kids get to run and jump at their own pace if they're able. They also all get to share something special -- making friends who understand them.
There is a Taylor Family Foundation Fundraiser on Sunday, August 25.
