For Rosemary Vincec, increasing awareness about scleroderma is the critical 1st step that will open the door to raise the needed funds to support scleroderma research initiatives.
It has been said that in long distance running the only opponent you have to beat is yourself. Rosemary Vincec loved to run. For thirty-two years, she was the perfect vision of health. All of that would change in 1994, as she would face her stiffest opponent yet.
“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.”
Toronto Scleroderma Program
For the past ten 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.”
Rosemary has been a member of the Mississauga Support Group for the Scleroderma Society of Ontario for the past 12 years. Currently, the support group has about 30 members.
“I am so thankful to be a part of this group,” says Rosemary. “For ten years I battled this disease on my own. It was very comforting to meet people who had similar challenges that I could share my experiences with.”
As part of awareness efforts, Rosemary helps organize an annual fundraising gala in the hope that one day researchers will be able to find a cure for scleroderma.
“Many people have never heard of scleroderma,” says Rosemary. “More people have this disease (an estimated 16,000 in Canada) than MS, but everyone knows what MS is, and few know of scleroderma. We need to change that. My hope is that someday soon, scleroderma will be a household name, just like MS is currently.”
This past April, the gala celebrated its 10th anniversary and has raised $875,000 to date. One hundred thousand dollars was donated to support Dr. Johnson’s research. Dr. Johnson will use the funds to conduct further research into the factors that can best predict survival for people living with scleroderma so to uncover the warning signs for those expected to develop additional complications. One such complication is pulmonary hypertension, high pressure in the blood vessels of the lungs, which is the leading cause of death in Canadian scleroderma patients.
“The average life expectancy for someone who develops both of these conditions is only one year,” explains Dr. Johnson. “Our research has found that certain genes are associated with poor survival, while age, sex, some antibodies and lower pressures in the pulmonary artery and the right side of the heart are indicators of a better longterm prognosis.”
Despite her diagnosis, Rosemary remains optimistic about the future: “You have no control over what challenges life brings, but you have full control over how you react to those challenges. The onus is on you to make life the best it can be, because essentially, life is what you make it. To this day, I get up with that attitude, and fight the daily challenges presented by my disease, and try to make the best of each day.”
To support the work of Dr. Sindhu Johnson in the Rheumatology Program, please contact Anette Larsson at firstname.lastname@example.org or 416 603 5800 x4059.