The symptoms of juvenile arthritis came on quickly for Ethan Berkovitz. The pain in his legs at age 8 was such that sometimes his father had to carry him onto the school bus.
He was off to sports camp shortly after the diagnosis. He tried out for and made a travel soccer team in Solon, where his family lives. Within a few months on medication, the swelling in his knees, fingers, ankles and toes receded to the point that the disease was in remission.
Now 17, he’s absorbed in 2 passions: playing soccer, which he fell in love with at age 3, and raising awareness about juvenile arthritis. He has made a mark at state and national levels as a dedicated advocate with the Arthritis Foundation.
Ethan’s story is one that Dr. Spalding wants all families affected by juvenile arthritis to hear, because it shows that the autoimmune disease should not limit a child in any way.
It hasn’t been easy. “It made me feel like the Tin Man. All my joints are stiff,” Ethan has said during talks. “I always toughed it out.”
Ethan has a type of arthritis called polyarticular because of the number of joints affected – 11 in his case. Back in 2009, his parents worried he would not be able to play soccer again. But Dr. Spalding urged him to play.
“Arthritis should never be a reason to restrict kids from whatever they want to do,” he said, noting patients who have played Division 1 college football.
As it turned out, “Soccer saved his life,” said Ethan’s father, David. It motivated him to battle through the aches and the bad days, and deal with heightened anxiety over the disease. His mental stress was so severe that it led to an eating disorder.
“What was going on in my head was much harder that dealing with pain,” Ethan recalled recently, seated with his father and mother, Joanne.
“I’ve always said soccer takes my problems away. When I’m on the field, nothing else matters.”
Medication helps, but that alone won’t curb the disease, said Dr. Spalding.
“The kids who get better do a few things,” he said. “They take their medicine and see their doctor, but also they stay active. Three or 4 times a week, they’re doing some kind of exercise. They focus on sleep and they focus on diet, too.”
Children also may need counseling for stress management, Dr. Spalding said.
“Any kids with chronic conditions are more likely to have anxiety or depression,” he said. “If we recognize it, we get them into counseling. It’s a major issue because it bleeds into all other areas of their lives.”
Juvenile arthritis affects about 300,000 children in the United States. Dr. Spalding said Akron Children’s sees 250 of them. He will start seeing patients at the Akron Children’s Specialty Care office in Beachwood starting this month. July also happens to be Juvenile Arthritis Awareness Month, a campaign of the Arthritis Foundation.
Ethan has been a stalwart fundraiser and activist for the foundation. At 14, he was chosen as the youth honoree for the Cleveland Walk to Cure Arthritis. The national group invited him to be a junior ambassador. And in March, the organization gave him the Emerging Leader in Advocacy Award at its annual summit in Washington D.C.
The award honors his advocacy on Capitol Hill and the Ohio Statehouse, and his involvement with the Walk to Cure Arthritis and Jingle Bell Run. Ethan has pushed for legislation, including a recent Ohio law that makes it easier for patients to obtain prescribed medications when insurers deny coverage.
“I always felt that having arthritis made me unique and special,” Ethan shared in an essay after the foundation selected him as a junior ambassador. “I never mind talking to people about this disease. It is so important to share our stories so that others can understand that even though I might look fine… I don’t always feel great.”
Like soccer, his advocacy work has been good medicine.
“He’s done a lot in recent years to reach out to others,” said Joanne. “His ability to talk about it has enabled him to work through the disease.”