If you saw 10-year-old Elise play midfield on the soccer field, you might not believe that she has juvenile arthritis. But it was only a few years ago, that “it hurt to walk or even move.” At 7, when this energetic young athlete began to experience pain and swelling in one of her knees, her parents presumed she had a sports-related injury and scheduled an appointment with a pediatric orthopedist. It would be some time later that an accurate diagnosis and aggressive treatment at Children’s Hospital of Philadelphia (CHOP) would finally set Elise on a path to a pain-free future.

When a knee brace and intensive physical therapy failed to address Elise’s pain and swelling, her orthopedist referred the family to a rheumatologist, where Elise was ultimately diagnosed with juvenile idiopathic arthritis (JIA), an autoimmune disease that causes inflammation and stiffness of the joints in children 16 years and under. An autoimmune disease happens when the immune system, which usually protects the body from germs, mistakenly attacks the body’s own healthy cells.

Elise began taking daily medication but continued to experience discomfort in many of her joints and was still unable to participate in the sports she loved.

“I was very sad,” remembers Elise. “It was so disappointing to see other kids moving happily, and I couldn’t do any of the things that I loved.”

After three months without results, Elise’s parents, Lilly and Alex, decided to seek a second opinion for their daughter. Pediatric rheumatology is a unique field, however, and it proved difficult to find another specialist near the family’s home in Michigan.

“We wanted Elise to have every opportunity to live a normal, pain-free life and to participate in all the activities she wanted to,” says Lilly. “So, we started to look for the best pediatric rheumatologists in the country.”   

Finding the right care

The family scheduled an appointment with Edward M. Behrens, MD, Chief of the Division of Rheumatology at CHOP, where children like Elise receive the most current and comprehensive care for JIA and other diseases that typically affect the bones, muscles and joints.  

“Dr. Behrens addressed us with such knowledge and experience,” says Lilly.  

Adds Alex: “From the first visit, we knew we’d found the right place and the right doctor for Elise.” 

Dr. Behrens explained that medicine has come a long way in treating JIA. He recommended an aggressive treatment approach to get Elise in remission (when a disease no longer causes symptoms) as soon as possible and prevent future damage to her joints.  

“It was such a blessing to hear that he had treated Olympic-level athletes, now able to perform at their highest level and live normal lives,” says Lilly.   

Says Elise: “It was so encouraging to know we’d finally found someone who could help me.” 

Elise was 8 years old when she began the treatment protocol for JIA: a weekly dose of methotrexate, which helps control arthritis, and an injectable type of medicine called a biologic, which helps calm the immune system and reduce inflammation.  

This combination proved very effective, and Elise reached remission in a matter of months. Although she has had to navigate some side effects of the medication, including nausea and fatigue, she has learned to give herself the injections and believes in the power of positivity to overcome challenges. “You have to stay empowered,” she says. “If you don’t give up and you keep fighting, you will get better.”  

Now 10, Elise is pain-free and back to all of her favorite activities, including tennis, swimming and highly competitive soccer. “We encouraged Elise to challenge herself to rebuild her strength and endurance,” says Alex. “She quickly rebounded in her athletic confidence and enjoyment of life.”

Elise’s determination and positivity paid off: her soccer team recently won a championship! “CHOP is an amazing place,” she says. “They get you where you want to be.” 

A painful beginning, a bright future

The outlook for children like Elise with JIA has gotten much better in recent years, thanks to advances in treatments. However, JIA can continue into adulthood and regular monitoring by a pediatric rheumatologist is critical. Elise and her family travel from Michigan to Philadelphia every three months for follow-up visits with Dr. Behrens.

“We happily make the trip,” says Lilly. “We’re so grateful for the care that we’ve experienced at CHOP.”