Forming a familial front against arthritis

Aya with her mother, Keiko

On September 28, 2023, Keiko Kataoka and her daughter Aya Thede will take a unique walk together. It won’t be a stroll to school or around their neighbourhood – instead, it’ll be a walk down a runway flanked by flashing cameras and passionate Arthritis Society Canada supporters. They’ll model designer outfits at the second annual Fashion on Fire event, doing their part to raise awareness for a cause near and dear to their hearts. 

Keiko’s journey with arthritis began in early 2020 when Aya, then an active two-year-old, started to crawl rather than run. With time, she also developed a limp. Her joints and legs were swollen and warm to the touch. Aya couldn’t voice her pain, but Keiko’s instincts told her something was wrong. 

Four months later, after many appointments with specialists, Aya was diagnosed with juvenile idiopathic arthritis (JIA). Many assume arthritis only affects older adults, but 25,000 Canadian children live with this inflammatory form of the disease, the cause of which is unknown. It can trigger intense pain and disability, and when left untreated, can lead to irreparable joint damage. 

With treatment, Aya started to improve, but this wasn’t the end of her family’s journey with arthritis.  

When a mother shares her child’s pain 

Keiko comforts Aya, her daughterIn summer 2021, Keiko welcomed a second daughter. Shortly after, she began to experience joint pain in the morning, which quickly escalated so that picking up her daughter from her crib and using stairs became unmanageable. Eventually, she was relying on a cane and a knee brace to get around, and needed help getting out of bed, fastening her seatbelt and even putting on her shoes. She wanted answers.  

After months of waiting, uncertainty, appointments and follow-up, Keiko was finally diagnosed with rheumatoid arthritis, an inflammatory disease that can affect multiple joints in the body. It impacts 300,000 Canadians. 

Keiko says access to care can be frustratingly slow, partly because there is a shortage of rheumatologists in Canada. She adds, “Pain is hard to describe and not always understood in the healthcare system, particularly for women.” 

“It might sound strange, but having a diagnosis meant treatment could start. Pain makes you feel desperate, so feeling like there could be relief ahead was welcome. I needed to try to achieve some normalcy and predictability to my life,” she says.  

Medication offered Keiko a “new normal,” but that doesn’t mean she’s pain free. “That’s one of the most frustrating parts of living with arthritis – it’s not a linear path. There are periods of remission and periods of flares, days when the medication doesn’t seem to be working and other times when I feel good,” she says. 

“If I have a ‘big’ day with the kids that involves a lot of physical activity, it may take a day to recover. I used to be an athlete – softball, tennis and volleyball – and I’ve been forced to put activities that I love on the back-burner because the risk of injury is too high,” she adds. “I am continually trying to strike a balance of moving to keep my joints healthy and not overdoing it.” 

From adversity to advocacy 

Keiko with Aya at Fashion on FireArthritis Society Canada has been an important presence in Keiko’s experience with the disease. She has relied on the organization’s resources and information, and she has benefited from being part of a new network. “It has been wonderful to find a sense of community and opportunities to connect with others who really understand what it is like to live with arthritis,” she says. 

It was this appreciation that inspired Keiko to get involved with Fashion on Fire, a celebration of fashion and philanthropy featuring accessible, arthritis-friendly creations by acclaimed designer, David Dixon. Keiko and Aya walked the runway in 2022 and are eager to participate again. “Using fashion to spark a conversation about arthritis is a creative, accessible means to better understand a topic that is often misunderstood – not to mention it was a lot of fun to be involved last year!,” says Keiko. 

The event is a prelude to Arthritis Society Canada’s yearly gala, the Arthritis Fire Ball, slated for November 4 this year. 

“I’m so proud of Keiko and her advocacy for Arthritis Society Canada. She’s a wonderful advocate for herself and her family,” says Trish Barbato, President & CEO, Arthritis Society Canada. “It’s so important for people who have arthritis to advocate for themselves – to get a proper diagnosis and proper treatment, and to make sure they are accessing all the services available to them.” 

Today, Aya is back to being an active ball of energy. The five-year-old is in unmedicated remission – where the disease remains inactive, even in the absence of medication – and enjoys a variety of sports. 

As for Keiko, she is happily working, keeping up with her two young daughters and staying busy volunteering. In April 2023, she received a Mary Pack Volunteer Award, a distinction presented to the most dedicated and inspirational Arthritis Society Canada volunteers.  

“It’s an honour to advocate for people living with arthritis,” says Keiko, “and to help Arthritis Society Canada – an organization that has helped my family beyond measure.”