METAMORA — When a doctor told Stephanie Jones that her daughter, Ava, had arthritis, Stephanie said "'Huh? She is 3, not 90.'"
"I was scared. I saw old people crippled with arthritis. Would my daughter be able to play?"
Ava already had lost vision in her right eye and was in pain because of a swollen left knee. Now, her mother knew why.
Ava, now 8, has juvenile rheumatoid arthritis, also known as juvenile idiopathic arthritis. She also has uveitis, an eye disease that is a complication of juvenile arthritis (JA). Uveitis caused blindness in her right eye and may affect vision in her left eye.
"I see nothing in my right eye," Ava said matter-of-factly in her Metamora home after school on Oct. 17.
"Sometimes, it's hard for me to see. I bump into things," she said with a smile, reflecting her upbeat personality.
"It's hard for me to walk and jump when my back and my knee are bothering me," Ava said. "When it's hard for me to do stuff, my family helps me."
"In the morning, my knees hurt," said Ava, still smiling. "I get tired at 7 (p.m.). When I can't do it, I encourage myself and try harder."
Then she went outside to jump on a trampoline for a few minutes with her sisters — Noelle, 9, and Cassidy, 4. Later, the second-grader took a homework break by playing catch with herself.
Stephanie smiled slightly. "She'll pay for that later," referring to pain that follows Ava's physical exertion.
"I have arthritis, but I'm not your grandma," Ava said with a laugh.
While Ava has moderate-to-severe JA, she is not alone.
More than 50 million Americans have arthritis, including 300,000 children with JA, said Lucy Mardis, Central Illinois development manager for the Arthritis Foundation.
In Illinois, 2.3 million people have been diagnosed with arthritis, including 13,100 children, Mardis said.
"Arthritis affects everyone," Mardis said. "You don't have to be old and it doesn't just affect your joints."
Ava is the youth honoree for the 29th annual Jingle Bell Run on Nov. 13 at Heartland Community College in Normal. The Arthritis Foundation-sponsored event is designed to raise awareness and money for research to find a cure and for programs and services.
Arthritis refers to more than 100 different diseases that affect the joints and tissues, causing mild to severe inflammation and pain. The cause isn't known but there is a genetic predisposition.
There is no cure but medications and therapy can relieve inflammation, control pain and improve quality of life.
Osteoarthritis is the most prevalent type of arthritis and is the result of the breakdown of cartilage in one or more joints.
Rheumatoid arthritis is an autoimmune type of arthritis, affecting not just the joints but other body systems.
Juvenile rheumatoid arthritis or juvenile idiopathic arthritis is an autoimmune disease in which white blood cells can't tell the difference between the body's healthy cells and germs. So the immune system releases chemicals that damage healthy tissues, causing inflammation and pain.
The same inflammation that causes swollen, painful joints can strike a child's eyes. Uveitis is when inflammation happens in the eyes, according to the Arthritis Foundation.
Ava was 2 years old when her right eye turned from blue to green, Stephanie recalled. In addition, Ava wasn't walking but would scoot on her bottom or army-crawl on her stomach.
"She was trying to avoid putting pressure on her joints, but we didn't know that yet," her mother said.
As Ava underwent tests to determine the cause, her left knee began to swell and hurt. By this time, she was 3 and was walking but in pain. She had lost vision in her right eye.
That's when she was diagnosed with JA.
Stephanie took Ava to a rheumatologist in Peoria, who told Stephanie that Ava would be better served by a pediatric rheumatologist. The closest was in Chicago. Ava sees a pediatric rheumatologist at Lurie Children's Hospital of Chicago.
"It's hard for her to get moving in the morning," Stephanie said of Ava. "She's stiff and sore. Her left knee is the primary joint affected but she has minor involvement over the rest of her body."
"She tries to be normal at school," Stephanie said of the second-grader. Even though Ava has a school-approved plan allowing her to limit physical activity, "she pushes herself," her mother said.
She likes playing and being physically active with her family, but "by the time she gets home from school and gets her homework done, she wants to lie down."
"She doesn't complain. I think it's because she knows no different."
Over the years, Ava has been on a variety of arthritis medicines. Because those medicines have helped minimally — and because "the disease has quieted down recently" — Ava is taking only non-steroidal anti-inflammatories, such as extra-strength ibuprofen, her mother said.
Twice a month, Ava sees Saundi Pugh, a pediatric physical therapist with Children's Hospital of Illinois, at a satellite clinic in Washington. Pugh works with Ava on strengthening her entire body and on balance, while trying to not put too much strain on her joints.
"For her therapy, I slow everything down to control movement, which is difficult for her," Pugh said. "I am trying to teach her control and modification of activity."
The goal is to strengthen Ava's muscles to minimize damage to her joints, maintaining her quality of life.
"She is learning to use her body to protect her joints to keep herself healthy," Pugh said. "We're also getting her orthotics for her shoes to help with foot alignment."
"She's doing well," Pugh said. "She's so much fun to work with because she's playful and wants to do everything. I have to slow her down."
"Ava thinks that if she says 'no' to activities, it's like letting the arthritis win," Pugh explained. "I tell her, 'you have to pick and choose your activities or, later tonight, you will be in pain.'"
Attending an Arthritis Foundation national conference for children with JA and their families last summer in Phoenix helped. "I realized I wasn't the only kid with JA," Ava said.
"This is something she will be dealing with for the rest of her life, unless someone finds a cure," Pugh said.
Stephanie said "Some people with arthritis do great for years and then, suddenly, they're in a wheelchair. She will never regain vision in her right eye. The other eye? We don't know."
"Arthritis is such a rollercoaster," Stephanie said. "I can't imagine being on that rollercoaster at age 8."
Ava looked up and smiled.