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Living with Juvenile Arthritis

Think arthritis is for seniors? Think again. Nearly 300,000 U.S. children suffer from the condition. Meet Mia Brees, pictured above with her mother, a teen undergoing treatment at Kaiser Permanente who’s living life to the fullest despite the disease. 

Mia Brees is 16 years old. She lives in a little town outside of Santa Cruz and likes sushi, surfing, and crafts. She plans to study engineering in college.

She also has juvenile idiopathic arthritis, or JIA, an autoimmune condition causing inflamed, swollen joints. Her disease could go into remission — but it won’t go away.

Under the supervision of Alexandra Aminoff, MD — one of 3 Kaiser Permanente pediatric rheumatologists serving patients throughout Northern California at campuses in Oakland, Roseville, and Santa Clara — Mia receives monthly medication infusions over several hours to treat her disease.

The treatment these days is a vast improvement over her early years of a weekly chemo drug, a second to offset the resulting nausea, and shots every 11 days. While Mia is still susceptible to illness, tires easily, and copes with pain and stiffness, she is well enough to be point guard on her high-school women’s basketball team.

Camp and Capitol Hill

“When Mia was 6, we thought she had sprained her ankle,” said Theresa, Mia’s mom and a therapist at the Kaiser Permanente San Jose Medical Center. “It was swollen and painful. It wouldn’t heal, and one day I touched it and she screamed.” A diagnosis of JIA soon followed.

“No one really knows why I have the disease,” Mia said. “We only know that a close family member had some autoimmune issues and Raynaud’s phenomenon, which is related to arthritis.”

Mia’s parents have helped her to lead a full life, such as enrolling her in a camp where she could meet other kids with juvenile arthritis, including a best friend.

“Mia is knowledgeable and well-spoken about her condition, but does not let it define her,” said Dr. Aminoff, who explained that some U.S. states don’t have any pediatric rheumatologists, due to a shortage of specialists in this rare area of medicine.

The soft-spoken Mia has even conquered her fear of public speaking to travel to Sacramento 6 times and to Washington, D.C., twice to meet with state and federal representatives about health bills benefiting people with chronic conditions.

525 Miles to Raise Awareness

Theresa Brees found her own silver lining in the diagnosis of her oldest child and only daughter. She participates in the California Coast Classic arthritis fundraising bike ride from San Francisco to Los Angeles each September.

“It makes me feel like I am doing something.”

It has also given her a parent peer group and an exercise she loves. Theresa rides 2 to 3 times a week and trains on a spin cycle. This year will be her sixth participating in the event and fourth cycling the entire 525 miles.

“A hard part of the disease is that Mia seems fine, so people don’t know her struggles or why she may need disabled seating,” Theresa said. “Just because you don’t see a disability, it doesn’t mean it isn’t there.”

“JIA can be a devastating disease,” Dr. Aminoff said. “But with the treatments we have today, the outcomes are much better. Our goal is always to help our patients, like Mia, get well enough to do the activities they love.”

Theresa Brees would like to create a Kaiser Permanente team for the 20th California Coast Classic in September 2020. Interested? Contact her at Theresa.Brees@kp.org.

Tags

diseasepediatricsSanta Clara

This Post Has 3 Comments

  1. I’m glad that you don’t let your juvenile idiopathic arthritis define you as I was also diagnosed as a child at 10 in 1970 with what they use to call juvenile rheumatoid arthritis. I have lived with it my whole life and went through so much growing up, but I never let it get me down. You go, girl!

  2. Northern California Kaiser Permanente has more Pediatric Rheumatologists than many university medical schools and children’s hospitals. They are all excellent.

  3. Mia, you are an inspiration!!! I am glad that you are knowledgeable and love that you do not allow JIA to define who you are! Keep up the great work and keep living your life! You Rock!!!

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