Still Shining: Ava’s Journey with Juvenile Ankylosing Spondylitis

May is Ankylosing Spondylitis (AS) Awareness Month. Many people think of AS as a condition that affects adults, but it can begin in childhood, too. Ava’s story is a powerful reminder of the resilience of kids living with Juvenile Ankylosing Spondylitis and the importance of early diagnosis, support, and community. Read on to learn how Ava and her family have navigated her journey with a whole lot of sunshine.

Ava is our eldest of 3 children, a 14-year-old sunshine-filled amazing girl who has always been very busy and active in sports until she started to develop hip and back stiffness and pain 4 years ago. Symptoms started after a birthday party at Apex, jumping and playing on the trampolines. We initially thought her symptoms may have been a combination of a growth spurt and a reactive arthritis in her hips at the time. Her dad (Curtis) and I (Erica) are both physiotherapists, and so between diagnostic clearing tests with her physician and conservative management strategies that we provided, her symptoms would come and go over the next year or so. By the following winter, and another flare that resulted in joint pain and reduced activity tolerance, we followed up with her family physician and were referred to the pediatric rheumatology department. Between MRI, blood tests and further assessment findings, she was diagnosed with Juvenile Ankylosing Spondylitis/Enthesopathy Related Arthritis, under the JIA umbrella.

Ava has become independent now as a high schooler and administers her own injections. They continue to be no fun, but at least with her improvement in symptoms, bloodwork, and MRI findings, she has been able to reduce the frequency of injections while maintaining stability of her AS. She just got through a great basketball season and is gearing up for flag football this spring. Although she does have some stiffness and the occasional aches and pains, her AS remains stable, which we are grateful for. We continue to be so proud of how she continues to be her positive, sunshine-filled self through it all.

She has had great support and care from the Pediatric Rheumatology Department at Jim Pattison Children’s Hospital. We were directed to Cassie + Friends from Ava’s clinical rheumatology nurse on our first visit, and have found great benefit from the online resources, social media posts, and webinars that we have attended. We’re so thankful to be part of a community that understands what families like ours are going through, and we’re hopeful that by sharing Ava’s story, we can help others feel seen, supported, and less alone.