Since she was 5 years old, Marina Gomez has been tumbling and doing flips as a budding gymnast.
Now the 16-year-old junior at Circle High School in Towanda – who won two consecutive gold medals in trampoline in the National USA Gymnastics Junior Olympics – can barely move in the morning. She can’t carry textbooks from classroom to classroom, and sometimes her right hand becomes so swollen she can’t hold a pen.
Gomez has juvenile arthritis, a painful, debilitating condition that affects about 300,000 children in the U.S.
According to the Arthritis Foundation, juvenile arthritis is an umbrella term to describe the many autoimmune and inflammatory conditions that can develop in those 16 or younger. While arthritis typically involves joint inflammation, juvenile arthritis conditions can also involve the eyes, skin, other organs and muscles.
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About one in 1,000 children in the U.S. is affected by juvenile arthritis, said Tim Shaver, a Wichita rheumatologist, and it’s estimated that about 3,000 children in Kansas live with the condition. Some are diagnosed as babies, while others, like Gomez, are diagnosed in their teens.
Gomez was diagnosed with a form of juvenile rheumatoid arthritis in January 2013 while visiting doctors for a gymnastics injury that was supposed to heal in four weeks. Instead, it took four months.
While recovering from a sprain to her left Achilles tendon that she suffered when doing a double front flip, Gomez noticed some swelling around the knuckles of her fingers. It got so bad she couldn’t even open her hand.
“That’s a red flag, when there’s swelling,” Shaver said. Many times active kids like Gomez won’t understand the difference between the aches and pains caused by practice and competing. Sometimes parents will attribute a child’s complaint to growing pains, he said.
“But growing pains won’t cause swelling,” he said. “And they won’t cause a child to limp or have diminished function,” such as having a hard time writing, playing, physically getting in and out of bed and doing other activities.
Gomez’s case of juvenile arthritis is so severe that doctors are treating it with aggressive medication, at adult potency levels, to try to get the disease into remission. She calls the weekly methotrexate shots she injects into her stomach every Sunday “my best friend.” The medication, which is often used to treat cancer, helps decrease the pain and swelling of arthritis and can decrease damage to the joints.
To counter the side effects of methotrexate, she takes 31 pills a week. In total, she takes 46 pills a week to control the symptoms of her disease. And that’s not counting the ones she takes as needed to help with the pain, which happens about four times a week, Gomez said. She has so many meds she keeps a list on her phone of what she takes and when.
When Gomez initially was diagnosed at age 14, she didn’t talk about the disease to others.
“I didn’t tell any of my friends,” she said. “I didn’t want to be made fun of, that it’s an old people’s disease.” If anyone asked her why she was limping, she told them she was still dealing with an injury.
Even after her diagnosis, Gomez was determined to compete one more time. She placed second in a regional gymnastics tournament in May 2014, then retired from competition.
While she’s given up competing, Gomez hasn’t given up on gymnastics – or trying to live a typical teenager’s life – because of the disease. Doctors advise that kids with juvenile arthritis stay physically active to help improve strength, maintain joint flexibility and other benefits.
Gomez’s strong will and determination – traits she’s exhibited since she taught herself to ride a two-wheeled bike at age 3 – often mask the difficulty she has in doing everyday functions, said her mom, Kathy.
“I like to stay active,” Gomez said. “Otherwise, I’d probably sit around and mope.”
Gomez teaches gymnastics classes once a week at Next Level Gymnastics Academy in McPherson and is captain of her school’s color guard. She wears wrist guards to help protect her wrist joints as she spins the metal poles as part of the flag line but admits it still hurts.
She also works a second part-time job at a local Wichita restaurant.
“I love shopping, so that’s why I have two jobs,” she said.
She hangs out with friends every Monday night in an after-school youth group and performs in two school choirs. But unlike other teenagers, she doesn’t do sleepovers because of the pain she usually suffers at night and in the morning, when joint stiffness sets in. For a long time after her diagnosis, the only thing that allowed her to sleep was when her mom tucked ice bags all around her limbs at night.
Last year for the first time, she participated in the Arthritis Foundation’s major fundraising event Walk to Cure Arthritis. She also went to a camp for kids with juvenile arthritis. She’s repeating both activities this year. She’s this year’s Wichita Walk to Cure Arthritis youth honoree, and when she returns to the weeklong camp in Lee’s Summit, Mo., she’ll be a counselor, not a camper.
Eventually she’d like to be a rheumatologist, she said.
“I think it would be something I’d like,” she said. “It’ll be like gymnastics, I’ll just take it in small steps” to pursue a career in which she’d help others suffering from conditions similar to hers.
Walk to Cure Arthritis
The 2015 Wichita Walk to Cure Arthritis starts at 8:30 a.m. Saturday at the Sedgwick County Zoo. The walk is part of the Arthritis Foundation’s nationwide fundraising event to help people with arthritis get access to treatment and to raise funds for research.
The Wichita event will feature 3-mile and 1-mile courses. Pet owners can bring their dogs to walk the course as well. There will also be clowns, jugglers, live mascots, a magician, live music, kids’ games and free food.
For more information about the walk, contact event coordinator Jack Brand, email@example.com or 316-213-3612, or go to http://wichitaks.walktocurearthritis.kintera.org.