In support of ‘gamechangers’ for juvenile arthritis

Her daughter’s experience with juvenile arthritis inspired Brigette Chang (centre) to support transformational research spearheaded by Arthritis Society Canada. supplied

One of the worst nightmares as a parent is not being able to help when your child is in pain. But what if you don’t even realize they are suffering?

This was the case for Brigette Chang, whose daughter Savanna was diagnosed with juvenile arthritis at the age of four, one of 25,000 Canadian children and adolescents who live with this chronic disease.

When she was a toddler, Savanna’s parents noticed she struggled with mobility issues. She resisted walking up the stairs and refrained from other physical activity. Initially, when her parents sought advice from a pediatrician, they were told Savanna would likely outgrow what might have been developmental challenges.

But when the family doctor examined Savanna, who had complained of aching limbs, the young girl could not straighten her arm. Tests were ordered and the diagnosis was determined.

Chang recalls she felt like a “horrible parent” for failing to come to her daughter’s aid sooner. But like so many, she “had no clue that juvenile arthritis even existed.”

Since then, she has dived into learning all she can. She is grateful for the resources, support and research of Arthritis Society Canada, whose efforts Chang and her brother, Andrew Chang, support through the Raymond Chang Foundation.

“Our parents always instilled in us the imperative to give back,” says Chang, who is especially excited about the UCAN CURE initiative, a research collaboration that will advance personalized medicine for childhood arthritis. Arthritis Society Canada has teamed up with Genome Canada and other institutions to fund this transformational research project.

“It will be a gxamechanger,” says Chang, noting that for Savanna, now 13, managing the disease has become a reality she will continue to face. “I’d love her to be 100 per cent healthy. But what’s key is for her is to be able to live her best life.”

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To view the full report as it appeared in The Globe's print edition: Arthritis Awareness