When she was 5, Tess Perkinson began to experience pain in her legs that was so severe it kept her up at night.
Her hands became sore if she spent a long time writing. She limped through a race at school, finishing second to last.
“I wanted to chop them off,” Tess, now 7, said of her legs.
In June, doctors diagnosed Tess with juvenile idiopathic arthritis. Previously called juvenile rheumatoid arthritis, the autoinflammatory disease occurs when a person’s immune system doesn’t work properly and attacks healthy cells. It results in joint swelling, pain and stiffness.
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With drug treatment, Tess, who lives in Raleigh and attends Joyner Elementary, now feels well enough to play the piano and do cartwheels with her 6-year-old sister, Margot.
She shouldn’t have any trouble finishing the Triangle Walk to Cure Arthritis course on Saturday. Tess is this year’s youth honoree for the event, and her family hopes her story will make more people aware that arthritis isn’t a disorder that only affects the elderly.
The walk, which features one- and three-mile courses, is one of the largest fundraisers for the Triangle office of the Arthritis Foundation. More than $80,000 has already been raised locally to help the national foundation’s mission to increase awareness and research efforts.
About 300,000 children and more than 50 million adults in the United States have one of the nearly 100 joint diseases informally known as arthritis, according to the Arthritis Foundation.
In North Carolina, about 8,400 children are living with arthritis, said Candice Fuller, director of the Triangle office of the Arthritis Foundation. More than 60 percent of arthritis sufferers are under the age of 65.
“The average person thinks arthritis is just aches and pains of old people, and that’s incorrect,” Fuller said.
Not just growing pains
Doctors didn’t realize right away that Tess was suffering with arthritis. They ordered X-rays to look for bone fractures, and when they didn’t find any, they sent her home.
“We kept just going back, and they kept just saying it was growing pains,” said her mother, Ashley Perkinson.
Tess finally saw a pediatric rheumatologist who noticed inflammation in her knee and right wrist. Her body’s immune system was attacking itself, causing inflammation and damage to her joints and nerves.
Tests confirmed juvenile arthritis.
She began an aggressive drug regimen that includes a once-weekly shot of Methotrexate, a chemotherapy and immunosuppressant sometimes used to treat cancers.
She also takes a biologic, an anti-inflammatory medication and folic acid to help minimize side effects.
Doctors hope the treatment will push the arthritis into remission, preventing further permanent damage to her bones and joints. Tess has significant damage to her wrist and hand, but doctors are hopeful some of the damage will heal as her bones grow.
There is no cure for arthritis, and powerful drugs are the best treatment available for the types of arthritis that cause a body’s immune system to attack itself, Fuller said.
When Hava Collins attended her first Triangle Walk to Cure Arthritis, she couldn’t make it through the one-mile course.
“We had to push her in the stroller, like her baby sister’s stroller,” said her mother, Shoshana Collins.
Hava, 14, of Cary was diagnosed with juvenile arthritis when she was 5. Doctors prescribed anti-inflammatory drugs, but the disease was still damaging her joints.
The family had moved from Los Angeles, and when Hava was 9, her new doctors put her on a drug regimen that made her nauseous and gave her mouth ulcers. Eventually, her family decided to home-school her.
Hava’s arthritis has been in remission for three years and she is once again taking ballet lessons at the Triangle Academy of Dance. She had to stop dancing when the arthritis became too severe.
Recently, Hava portrayed a fairy in a production of “Cinderella” as a junior member of the Carolina Youth Ballet.
This year, she is the youth chair for the Triangle Walk to Cure Arthritis.
The eighth-grader at West Lake Middle School in Apex hopes to enroll at Wake STEM Early College High School so she can get a jump start on her career goal of becoming a pediatric rheumatologist. She wants to help families of children diagnosed with juvenile arthritis.
“If everyone is aware of (arthritis), then people can be more aware of treatments and people don’t have to struggle so much,” she said.
Chris Cioffi: 919-829-4802, @ReporterCioffi
Find out more
The Triangle Walk to Cure Arthritis will begin at 9 a.m. Saturday, April 30, at the Imperial Center, 4309 Emperor Blvd., Durham. The event will feature one- and three-mile courses, prizes, a raffle and a food truck rodeo. Pets are welcome. For more information, go to http://bit.ly/1Wgnoqz.