Karol Bedoya-Carvajal
Manager of Operations,
Scleroderma Canada
Carly Burrow
Scleroderma is a rare autoimmune disease affecting the skin and organs. Explore new data and patient insights on its real-life impacts.
What is Scleroderma?
Scleroderma (also known as systemic sclerosis) is a rare, chronic, progressive autoimmune disease that affects multiple systems in the body. It is characterized by an overproduction of collagen, which leads to the thickening, hardening, and scarring of connective tissues, including the skin, blood vessels, and internal organs. The course of the disease varies widely from person to person, making it especially difficult to diagnose, manage, and predict. While there is currently no known cause or cure, treatment options are available to help manage symptoms and slow progression.
While scleroderma can cause visible scarring, particularly on the hands and face, these changes can be emotionally challenging, especially in a society where identity is often tied to appearance. At the same time, not everyone with scleroderma shows visible signs of the disease, which can lead others to perceive them as ‘healthy,’ furthering misconceptions about what it truly means to live with scleroderma. Beyond physical symptoms, people with scleroderma often face disruptions to their education, employment, finances, and overall quality of life. Living with a disease that has no cure can also lead to mental health struggles, as there is no standard path for navigating life with scleroderma.
The Importance of Seeing Scleroderma as a Whole
Much of the experience of living with scleroderma is invisible to others. Unless you are directly affected by the disease, it is hard to fully grasp the daily challenges, unpredictability, and isolation it can bring. Scleroderma is not just a rare disease; it impacts every part of a person’s life, from work and relationships to mental health and self confidence. Seeing scleroderma as a whole means recognizing the physical implications of the disease and understanding their impact on the individual living with them.
Unless you are directly affected by the disease, it is hard to fully grasp the daily challenges, unpredictability, and isolation it can bring.
In 2024, Scleroderma Canada conducted a nationwide survey to better understand the full impact of scleroderma in Canada. Our Patient Impact Survey was open between August 2024 and January 2025 and explored the physical, social, financial, and psychological effects of the disease on those diagnosed.
The insights gained from this survey have deepened our understanding of what it means to live with scleroderma in Canada. This data now informs how Scleroderma Canada directs funding, guides support programs, awareness initiative and sets research priorities, ensuring that our efforts are aligned with the real needs of the community.
To learn more about scleroderma visit scleroderma.ca.
Here’s what Canadians living with scleroderma shared with us:
“Not one health professional has ever asked me about my mental health. Always about physical symptoms, but never ask about our mental health”
“It’s a very difficult disease to cope with both physically and mentally.”
58.8%
felt their diagnosis has limited their career opportunities.
76%
reported they are not receiving any government financial support.
76%
said they are unable to participate in their usual social activities.
61%
reported increased feelings of social isolation since diagnosis.
64%
said they are physically unable to complete daily activities (getting dressed, cooking, brushing teeth, etc.) due to scleroderma.
To support our efforts, visit canadahelps.org
