Arthritis treatment helps local girl keep moving

Jackie Williams of Arroyo Grande keeps dancing, despite aching joints that usually affect adults rather than kids.

The 13-year-old was diagnosed with polyarticular juvenile rheumatoid arthritis when she was in the fifth grade, and her family finally found out what was causing the pain and swelling joints she had experienced since kindergarten.

“Polyarticular” means the arthritis affects more than five joints in the body. In Jackie's case, it affects her whole body, including her jaw.

For treatment, she started weekly chemotherapy injections and the anti-malarial medication Plaquenil, as well as anti-inflammatory drugs and natural supplements, such as fish oil and flaxseed oil.

Now she takes the supplements, the chemotherapy drug and biologics, which prevent her body's cells from receiving from immune system cells the signal that causes inflammation. Her disease is in medicated remission, meaning the medications are controlling the inflammation.

Jackie's passion is dancing, and she takes several dance classes a week to compete, including jazz, lyrical, tap and ballet. She's been selected as an All-Star dancer for the Southern California region for Hall of Fame, a national dance competition company.

She's also a straight-A student at Paulding Middle School in Arroyo Grande, according to her mother, Susan. Next year, she wants to try out for club volleyball. When she attends Arroyo Grande High School after that, she hopes to play volleyball there, as well as participate in the dance program.

Though she doesn't want arthritis to define her, it helps Jackie and her family to get support from other children and families who cope with the disease.

Jackie, her mother, Susan, her father, Joe, and her sister, Rachelle, attended The Painted Turtle camp, one of the Hole in the Wall camps founded by actor Paul Newman, from March 28 to March 30. The camp is in Lake Hughes, Calif., and holds family camps on weekends, and weeklong camps during the summer just for children with arthritis. The camp holds programs for children with other life-threatening illnesses, as well, according to the Hole in the Wall Web site. Activities include horseback riding, fishing, arts and crafts.

Doctors who are familiar with

juvenile arthritis are on hand to talk to the families. Many of the counselors have chronic diseases themselves, and hope to go into the medical profession.

This is the second time the family has been to the camp.

Susan Williams said she notices the bond Jackie has with other children who deal with arthritis.

“There's an unspoken language that these kids share,” Susan said. “They already understand what each other goes through.”

Having arthritis as a child can be lonely, since the disease isn't as well recognized as other chronic diseases children have.

Susan hopes to promote more awareness for the sake of others who may have arthritis without knowing it.

“We have to say something, because there's another kid out there that's sick and doesn't have the answer,” Susan said. “It's a real disease, and we want them to get treatment like we did for Jackie.”

Jackie empathizes with other kids who have arthritis who are hindered from completely doing what they want to do.

“It's partly the disease, and partly their attitude,” Jackie said. She feels because she didn't grow up knowing she had the disease, she didn't absorb as much fear and caution when it comes to dancing despite the arthritis.

“They're scared to hurt themselves with the disease, because they've been dealing with the disease their whole lives,” Jackie said.

Susan said when Jackie comes back from dance class sore and stiff, they don't know if it's normal or due to the arthritis. Still, they feel it helps her psychologically, and maybe even physically. Jackie's doctor recommended physical therapy for the disease, and although the doctor advised against dancing, Susan feels the dance is a form of physical therapy.

The disease is expensive, and Jackie has to travel to Los Angeles to see a doctor who is familiar with juvenile arthritis.

There are only 200 pediatric rheumatologists in all of North America, Susan said, and at least 300,000 children who have juvenile rheumatoid arthritis in the U.S. Los Angeles has the closest pediatric rheumatologist to the family.

Susan thinks her daughter is an inspiration.

“She's a pretty awesome kid,” Susan said. “As bad as it gets, she doesn't complain.”

Jackie wants to live as normal a life as possible, even when she's sore from dancing.

“I just have to go out and dance the next day,” Jackie said. “It's hard, but it's rewarding.”

How You Can Help:

Jackie and her family are participating in the 2008 San Luis Obispo Arthritis Walk in

Atascadero. The walk raises funds for the Arthritis Foundation, which contributes

toward research on juvenile rheumatoid arthritis. To donate to Jackie's team, “Jackie's Joints,” go to www.arthritiswalk slo.kintera.org and click on “Sponsor a Participant.” Type “Jackie Williams” in the search box.

To sponsor other participants in the 2008 Arthritis Walk in Santa Barbara, visit arthritiswalksb.kintera.org.

More About Juvenile Rheumatoid Arthritis:

There are three types of

juvenile rheumatoid arthritis.

n Polyarticular onset JRA

affects five or more joints.

n Pauciarticular onset JRA

affects four or fewer joints, and is the most common form of JRA, particularly in young children.

n Systemic onset JRA affects the entire body, and may affect the internal organs.

Treatment for JRA:

includes medication, exercise, eye care, dental care and proper nutrition, and sometimes surgery for long-term problems.

Therapeutic exercise includes range-of-motion and strengthening exercises.

Splints help keep joints in the correct position and relieve pain.

Medications to treat JRA may include:

nonsteroidal anti-inflammatory drugs, such as ibuprofen and naproxen to control pain and inflammation

disease-modifying anti-inflammatory drugs, which prevent joint damage

corticosteroids, which are strong anti-inflammatory drugs used when the disease is severe or hasn't responded to other drugs

hydroxychloroquine, which controls joint pain and swelling and is often combined with methotrexate

biologic agents, which modify the immune system to reduce inflammation

analgesics, which provide pain relief but don't decrease inflammation

For more information, visit www.arthritis.org.

- Source: Arthritis Foundation

Bettina Adragna can be reached at 739-2220 or at badragna@santamariatimes.com.