Unlocking the mystery of scleroderma

Rosemary Vincec loved to run. For 32 years, she was the picture of health. All of that would change in 1994. “I began to experience extreme pain and swelling in my knees while running in the Easter Seals 24-Hour-Relay,” recalls Rosemary. “It got so bad, I had to go to the medical tent to get iced down. I was told it was likely tendonitis and that I should refrain from high impact activities on my joints.”

But the pain only got worse. Every few weeks a new symptom would surface: a slight chill would cause Rosemary’s fingers to turn the colour of blue ink; small red veins would begin to appear in clusters on her face; and the skin on her hands became increasingly dry and hard. A year of tests and visits with numerous specialists solved little. Eventually, Rosemary’s diagnostic journey led her to a rheumatologist. Blood tests would reveal she had scleroderma, a chronic, progressive autoimmune disease of the connective tissue that has no known cure.

“It was shocking news,” says Rosemary. “While it was a sense of relief to finally know what was causing my symptoms, it was very difficult to accept the major lifestyle adjustment I would have to undergo because I was no longer able to participate in activities I so much loved to do.”

For the past 10 years, Rosemary has been under the care of scleroderma specialist Dr. Sindhu Johnson, who leads the Toronto Scleroderma Program. Dr. Johnson has developed an international reputation for her novel research in scleroderma and is actively engaged in both translational and clinical research with the goals of improving understanding of scleroderma, finding better treatments, and improving patient’s lives. “Our program provides multidisciplinary care, medical education and research in the scleroderma spectrum of diseases,” says Dr. Johnson. “Our research is helping reveal insights into the possible causes of scleroderma and the creation of entirely new treatment approaches.”

Scleroderma causes thickening of the skin leading to disfigurement of areas of the body such as the face and hands. It can also impact internal organs and in some cases, cause fatal damage to the heart, lungs, stomach or kidneys. People with scleroderma face significant challenges in their day-to-day living.

All the things we take for granted feel insurmountable – buttoning clothes is laborious and often not possible. As with many autoimmune diseases, there is probably no single specific cause for scleroderma, but rather a complex series of issues that lead to the disease. There is likely both a genetic component as well as an environmental component.

As Dr. Johnson searches for improved outcomes for individuals with scleroderma, she is motivated by patients like Rosemary. “I have seen the physical and emotional toll that scleroderma has had on Rosemary. She is a tremendous ambassador for our program and is so driven to help us in supporting our research efforts to get us one step closer to finding a cure for scleroderma.

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