Barbara Williams had always considered herself to be a healthy and active person. After all, she had an exciting career in the pharmaceutical industry, her children had grown and were on their own, and she was active in her local community. She also enjoyed travelling.
But the one thing that didn’t fit in with her plans was becoming ill with a rare disease. She says it certainly wasn’t something she had ever considered. “My grandmother was still going strong, living in her own home at the age of 101 and I assumed I would follow in her footsteps.”
However, in 2004, after experiencing “some strange symptoms” William’s world was about to change. “My hands and feet began to swell. At first I had no pain, but as the swelling increased the pain began and it was an effort to move from sitting to standing. Breathlessness was soon added to the mix,” she explains.
Feeling vague and exhausted, Williams underwent a variety of medical tests. Eventually, a blood test would provide her family doctor with a clue into what was causing her symptoms.
“He told me that I might have something called scleroderma, a rare disease that he had only seen three times before during his 25 plus year career,” she says, adding, “I was shocked to hear that I might have a disease that was completely unknown to me.”
It is estimated that some 40,000 Canadians are living with scleroderma – an autoimmune connective tissue disease that affects small blood vessels and causes excess collagen accumulation. Its symptoms include thickening of the skin or tissue on internal organs, as well as joint swelling and pain.
A few months later, with her symptoms progressing, Williams was hospitalized. Her hospital stay provided her with the confirmation that she did, in fact, have scleroderma with pulmonary fibrosis – the root of her breathlessness.
“As the disease progressed my skin tightened until it felt as though it was two sizes to small for my body. Combined with swollen hands and feet, and breathlessness with any exertion, it was difficult to complete even the simplest task. My planned and happy life seemed a distant memory,” she says.
That was until Williams began receiving treatment and care at St. Joseph’s Healthcare where the Hamilton Scleroderma Group (HSG) is located.
“Time and the excellent medical care that I have received at St. Joseph’s are keeping the disease stable,” she says. At present, there is no cure for the disease, though treatment options are available to slow its progression and help with symptoms. However, Williams says she is optimistic a cure can be found.
On April 27, the Scleroderma Society of Ontario (SSO) announced their largest donation ever: a $456,000 gift to support the innovative research, education and patient care provided by the HSG.
Maureen Sauvé, president of the SSO, said, “St. Joseph’s has always been home to some incredible care providers and physicians. But it’s also a place where those physicians don’t just want to treat your disease, they want to better understand it, know where it came from, and how it can be treated most effectively. That’s the kind of holistic, research-based clinical care the Scleroderma Society of Ontario, and its regional chapters are proud to support.”
Specifically, the Society’s gift will support the Hamilton Scleroderma Group, an interdisciplinary clinic at St. Joseph’s Charlton Campus that specializes in the research, treatment and care of people living with scleroderma. All of the HSG doctors are attending physicians at St. Joseph’s Healthcare Hamilton and faculty members at McMaster University’s School of Medicine.
Dr. Gerard Cox, co-chair of the Group, explained why bringing health-care research and education together with clinical care is so vitally important. “Scleroderma is a complex disease, with varying symptoms and many compounding medical concerns. We’re unsure of its root cause, and right now there is no cure. But by combining clinical care with scientific research, we’re enhancing our understanding of the disease and ensuring our patients have access to clinicians who are educated in the latest advances in Scleroderma care,” he said.