Like other children her age, four-year-old Sophia Rothman attends preschool, loves playing with her toys and enjoys having fun with her parents, Fairfax District residents Joel Rothman and Laura Schultz.

Laura Schultz, Sophia Rothman and Joel Rothman will participate in the Arthritis Walk on June 4 to raise awareness about juvenile arthritis. (photo by Edwin Folven)

But Sophia, who suffers from juvenile rheumatoid arthritis, has not always been able to enjoy those experiences during the past two years since she was diagnosed with the condition, which affects 300,000 children nationwide. On Saturday, June 4, Sophia and her family will participate in the “Let’s Move Together” Arthritis Walk for Los Angeles, walking with thousands of other people to generate awareness about the juvenile rheumatoid arthritis and support for a cure. The Arthritis Foundation has named Sophia the 2011 Youth Honoree for the event, which will be held at the Santa Monica Pier.

Rothman said he hopes Sophia’s story will generate more understanding and awareness about arthritis, which many people consider to be a disease that only affects older people. While more than 50 million adults suffer from arthritis in the United States, the significant number of children affected is something that gets far less attention, Rothman said. While there is no cure for juvenile rheumatoid arthritis, it can be medically-controlled, allowing children like Sophia to live a healthy, normal life. Rothman said he hopes events like the Arthritis Walk will lessen the misconceptions about arthritis and inspire people to support efforts to find a cure.

“My biggest hope is that someday a cure will be found, but also that there is enough awareness generated out there so that kids don’t feel stigmatized by having the disease,” Rothman said. “I also want to make sure that these kids have access to the healthcare and specialists that Sophia had.”

Sophia was first diagnosed with juvenile rheumatoid arthritis when she was two years old. One morning in 2009, while the family was on a trip to New York, Rothman and Schultz realized Sophia’s knee was a little swollen. Family members and friends, some of whom were doctors, told them that it could be a number of minor things causing the swelling and that they shouldn’t be overly concerned. Sophia appeared to be getting better, but Rothman said it kept nagging at him.

“For days she was fine, and we came home and got back into our busy lives, and literally one morning, she got up and couldn’t walk,” Rothman said. “The knee almost doubled in size overnight. She was crying and she was in a lot of pain.”

Rothman and Schultz immediately took her to Cedars-Sinai Medical Center, where a battery of tests were performed to determine what was wrong.

Schultz said the pediatrician at Cedars-Sinai considered several possibilities, but seven weeks after initially examining Sophia, the diagnosis came back as juvenile rheumatoid arthritis. Then they learned that Sophia also had a related affliction known as uveitis, which attacks the eyes and can lead to blindness. Sophia immediately began a strict regimen of medications and treatments that includes steroid eye drops administered four-times-a-day, weekly oral chemotherapy and monthly infusions of medication to suppress her immune system. Juvenile rheumatoid arthritis affects the immune system, and while it is not specifically known what causes the disease, it is suspected to be genetic.

Because Cedars-Sinai does not have a pediatric rheumatology department, the family was referred to Children’s Hospital Los Angeles, which has several specialists in juvenile rheumatoid arthritis. During the initial phases of her treatment, Sophia suffered a great deal but mostly remained upbeat. She endured having to take the “yucky medicine” orally and having weekly infusions of Remicade, a drug known as a “biologic” that suppresses the immune system. After seven months, the disease had largely been controlled, and Sophia was in “medical remission”.

“Her eyes started getting better, her knee started getting better,” Schultz said. “We were hopeful that things were moving in the right direction.”

Sophia continued her treatments, which doctors began to taper off, and was symptom-free for the rest of 2010 and the beginning of this year. But three months ago, Sophia encountered new problems when the weekly oral chemotherapy began causing an allergic reaction and a severe fever. The doctors took her off the chemotherapy, and the arthritis started flaring up again. Fortunately, a new treatment regimen was initiated, and Sophia’s condition has now stabilized again, Rothman added.

“It was right back to square one,” he said. “Now the disease is once again moving in the right direction, but she is not out of the woods yet. You have these quiet periods and then it flares up again.”

Schultz and Rothman said one of their biggest concerns is how the disease will affect Sophia as she grows older. There is a 50 percent chance that it will go into permanent remission during puberty, which the parents called the best-case scenario. Additionally, some of the medications that Sophia is taking increase the chance of developing cancer years later.

“Hopefully, she will outgrow it,” Schultz said. “But even if it goes away during puberty, there is no guarantee it will go away forever.”

In addition to researching the disease and seeking out the best treatments, Rothman and Schultz had become very proactive in raising awareness about the disease. They appeared in a segment about juvenile rheumatoid arthritis on a local Fox News broadcast, and through a mutual friend, encouraged actress Teri Hatcher to serve as Sophia’s sponsor during the Malibu Triathlon. The family also started participating in the Arthritis Walk last year, and have raised more than $13,000 in the fight against the disease. Rothman said he hopes more can be done to raise awareness, because there is a shortage nationwide of facilities and doctors who specialize in juvenile rheumatoid arthritis. At least nine states do not even have one pediatric rheumatologist, Rothman added.

“If we had lived in Nevada, she would have gone blind before we got a diagnosis,” Rothman added. “That inspired us to double our commitment to the Arthritis Foundation and led to us trying to raise money and awareness that kids can get arthritis too.”

Matthew Duggan, special events coordinator for the Arthritis Foundation who is organizing the walk, said Sophia’ story was extremely inspirational, and led to her being designated as the Youth Honoree. Duggan added that the walk, which will be celebrating its 10th anniversary, has raised more than $430,000 for programs, services and resources, including a summer camp for children suffering from arthritis.

“The Arthritis Foundation is so fortunate that Sophia Rothman is our honoree,” Duggan said. “Her parents have done a fantastic job of being the face of arthritis and reaching out to the media and anyone else in letting them know that arthritis is not just an old person’s disease, and that children are also affected by it.”

Anyone who is interested in participating in the walk can register through the day of the event. Registration will begin on June 4 at 7:30 a.m., and the walk will begin at 9 a.m. The event will be staged in Lot 1, next to the Santa Monica Pier, 1550 Pacific Coast Highway. For information, call (323)954-5750, or visit www.glaarthritiswalk.org.