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The back and leg pain started when Susan Rivers was just 10 years old. Her family doctor – followed by a succession of other physicians – told her parents the aches were a simple side effect of growing.
But as other kids' "growing pains" dissipated, Susan's back issues got progressively worse. Both she and her family believed it went beyond normal adolescent discomfort. Yet, it never occurred to her physicians that she could be suffering from arthritis, a condition commonly associated with old age.
By the time Susan graduated from high school in Parry Sound, Ont., she had spent nearly half her life in often debilitating pain. The sporadic stiffness and aching she'd experienced as a child had grown more frequent, and she could no longer ignore it or shake it off.
"I felt old, but I wasn't old," she says. "It was very frustrating."
At the age of 18, Susan was referred to a rheumatologist, who diagnosed her with ankylosing spondylitis (AS), a form of arthritis that triggers inflammation of the vertebrae, causing severe pain. If it goes untreated, AS can also cause permanent damage to the spine, limiting mobility.
"My first reaction to the diagnosis was, 'I'm not crazy,'" says Susan, now 38. "It was something this whole time."
When Rivers first met Dr. Robert Inman, a rheumatologist and Medical Director of the Arthritis Program at UHN, as well as a researcher at the Krembil Research Institute, 20 years ago, she was struggling.
She had started attending university, but she couldn't climb stairs or walk more than short distances, and her medical team had a hard time finding drugs that worked without causing unacceptable side effects, such as nausea, headaches and dizziness.
Susan withdrew from her friends and found it difficult to pay attention in class because it hurt to sit. It took her 10 years to complete her degree.
"I went through an extreme depression," she says. "I was in a lot of pain and thought, what is the point of living if you can't live your life?"
Krembil Research Arthritis Magazine featured in
The Globe and Mail.
There are six million Canadians currently living with arthritis. The Krembil Research Institute has teamed up with
The Globe and Mail on a special project to highlight the groundbreaking research and clinical advancements happening within UHN’s Arthritis Program, at Krembil. Inside this issue, you’ll learn how our dedicated scientists and clinicians are developing innovative techniques and technologies and pioneering new discoveries to help patients prevent, treat and recover from arthritis. The
Arthritis Magazine, 2019 edition is now available online.