Graeme’s story: Living a full life in the face of ankylosing spondylitis

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For the hundreds of thousands of Canadians with inflammatory arthritis, the road to effective treatment can be rocky.

Arthritis comes in many forms beyond the rheumatoid arthritis and osteoarthritis we are all familiar with. For those with ankylosing spondylitis (AS), one of a larger group of conditions known collectively as axial spondylarthritis, the disabling effects of the disease can strike hard and fast, often at a young age.

Graeme Reed of Ottawa was 19 years old when he began to experience severe stiffness in his back. "I played a lot of competitive sports growing up and during my high school years: soccer, rugby, hockey," says Graeme, now 28 years old and Interim President of the Canadian Spondylitis Association (CSA). "As I transitioned to university, though, my body, particularly my spine, began to get increasingly stiff. At first, I attributed it to just not being in the same sort of shape I had been in before, but it eventually reached the point where it was clear that it was something more.

For Graeme, as for so many with this condition, the journey to diagnosis was a frustrating one. Between X-rays, second opinions, blood tests, CAT scans, and referrals to multiple specialists, Graeme lived through four and a half years of pain, stiffness, fatigue, and increasing immobility before receiving a definitive AS diagnosis in 2016. And that was relatively quick, in the greater scheme of things. The average patient goes seven to eight years before receiving a diagnosis, which is especially concerning given that AS is a progressive and systemic disease that, untreated, can lead to irreversible spinal fusion and increased risk of heart attack and stroke.

"The primary reason for the delay in diagnosis is that back pain is such a common symptom in the general population," says Dr. Nigil Haroon, Co-Director of the Spondylitis Program at the University Health Network (UHN) in Toronto. "Roughly 50 per cent of North American adults have experienced significant back pain in their lives and there’s no single test you can do with adequate specificity to identify AS. There are some features, however, that can help us better identify AS. If there’s chronic back pain that is inflammatory in nature, then about 15 per cent of patients will have AS. We can also have higher confidence if we see associated features like uveitis (inflammation in the eyes), bowel involvement, or inflammation in one or two other joints such as an ankle or knee."

The connection between AS and inflammatory bowel disease (IBD), such as Crohn's disease or ulcerative colitis, is particularly strong. Though less than one Canadian in 100 suffers from either IBD or AS independently, as many as 13 per cent of IBD patients also have AS. Graeme himself is in the subset of the population that lives with both.

With support, access, and advocacy, AS patients can have a promising future

As for Graeme, he was able to receive treatment relatively quickly after his diagnosis. He recognizes, however, that he was lucky in doing so. "I first got on my treatment in September of 2016, and it had a deep impact on my condition," he recalls. "It helped me to continue with my life.”

Through his work at the CSA, Graeme has dedicated himself to ensuring that every AS patient is empowered to advocate for equal access to treatment and an equal opportunity to write their own future. "It ends up falling on AS folks to advocate for themselves, as it often does for anyone living with a chronic condition that involves multiple different specialists," he says. "But just because there’s a need to self-advocate, doesn't necessarily mean you need to do everything on your own."

Graeme's own plans are ambitious. In addition to heading the CSA and working full-time, he has recently begun pursuing a PhD and is simultaneously training for a triathlon. He recognizes that there are still challenges ahead, but also that maintaining a positive outlook is essential. "Health is about an individual's well-being and that has to include not only physical well-being but also mental and emotional well-being," he says. "I've dealt with feelings of helplessness and frustration myself and I've had some very low points. But there are also high points, and you can slowly learn to navigate your way through. Right now, I feel good about the future."