Teen describes life with juvenile arthritis

Caitlin Ryan was just 3 years old when she was diagnosed with juvenile arthritis.

Since then, the 14-year-old from Orange County, Calif., has had both hips replaced and lives with debilitating pain. Caitlin recently sat down with Dr. Manny Alvarez, senior managing health editor of FoxNews.com, to discuss what it’s like growing up with this condition. Dr. John Hardin, vice president of research for the Arthritis Foundation, joined them.

Caitlin said she doesn’t remember much of her diagnosis, because she was so little – however her parents told her they initially thought she had the flu. She had a high-spiking fever, rash, stiff neck and a swollen knee. Her parents then thought she might have fallen off her bike, but within one week, Caitlin was unable to walk.

“My parents told me it took us a while to get diagnosed,” Caitlin said. “I went to numerous doctors. They said it could be cancer, it could be muscular dystrophy. I was finally diagnosed with juvenile arthritis – and that was a shock to our whole family.”

Caitlin said she didn’t really grasp the meaning of her disease until she was old enough to attend school. That’s when she realized something was very wrong.

“I couldn’t play with my friends, go on the playground or even write, because I couldn’t pick up a pencil (due to pain),” Caitlin said. “I realized it was going to be hard.”

According to Hardin, about 300,000 U.S. children have juvenile arthritis.

“Over the past 15 years new drugs have been introduced, and we can do a much better job of controlling this condition,” he added. “It’s basically a disease that causes severe inflammation of all of the joints and sometimes systemic manifestations as well.”

Hardin said arthritis can develop at any age, and parents need to be aware that it does happen in children. Signs and symptoms may include limping, fever and/or skin rashes, and noticing something as simple as the child isn’t climbing like he or she used to.

“All of these things can be confusing to trained specialists; that’s why we need real experts in this disease who  can work with subtle clues to make a diagnosis,” Hardin said.

There are specific blood tests and X-rays that can be helpful in diagnosing juvenile arthritis, Hardin said, but “by and large, this is a clinical diagnosis that is made at the bedside – from taking a history, examining the patient and putting it together with whole laboratory picture.”

Caitlin had her first hip replacement at the age of 11, and the following year, her other hip was replaced.  She said she’s taken numerous medicines, including injections; but she’s found massage is very beneficial to relieving her pain. She also spends time swimming, which helps, and enjoys listening to music and hanging out with her friends.

Hardin said there is much research being done to figure out what treatments work best, as well as what causes the disease. He said researchers look at what genes are involved and what environmental factors play a role.

There is a genetic component to juvenile arthritis, Hardin said, but it’s hard to study genetics  in a disease that’s so rare.

“Cutting edge science is applied, and I’m happy to say, real advances have been made,” he said.

To learn more, visit www.arthritis.org.