Maggie Larché
MBChB, MRCP(UK), PhD, Professor of Medicine, McMaster University
Danielle Rice
Ph.D., C. Psych (Supervised Practice), Psychologist, St. Joseph’s Healthcare Hamilton, Assistant Professor, McMaster University
For the thousands of Canadians living with scleroderma, understanding the disease and supporting their mental health is critical.
Systemic sclerosis (also known as scleroderma) is a rare and chronic autoimmune disease that affects the body’s connective tissues. It’s characterized by scarring and thickening (sclerosis) of the skin and internal organs. Scleroderma’s exact cause is unknown, but it’s likely triggered by a combination of genetic and environmental factors. There’s currently no cure, but there are treatments available to help manage the symptoms and slow the disease’s progression.
Physical consequences of scleroderma include scarring of the skin, especially in the hands and face. The scarring can make it difficult to move the affected areas, so performing everyday tasks such as buttoning clothes and holding objects can be challenging. Facial features can change, too. Other symptoms may include joint pain, fingertip ulcers (breaks in the skin that are slow to heal), and gastrointestinal symptoms such as bloating, reflux, or difficulty swallowing. In more severe cases, scleroderma can also affect the internal organs, such as the lungs, heart, and kidneys, causing symptoms like shortness of breath and swelling in the ankles.
The importance of connection
Given these physical changes, many people with scleroderma face new mental health difficulties such as depression, anxiety, body image concerns, sleep difficulties, and fatigue. People with scleroderma experience depression at a much higher rate than the general population, but also at a higher rate than people with other chronic medical disorders. An important way to improve mental health is to connect with others living with the same condition. This can provide a sense of hope and community, as well as the social support that’s so beneficial to physical and mental health. Living with scleroderma can be challenging, but with a proper treatment plan and working with their health care provider to effectively manage their symptoms, many people are able to live full and active lives.
For more information on scleroderma, visit scleroderma.ca
Scleroderma is a multi-symptom disease that affects 1 in 2,500 Canadians nationwide.
Two of the earliest signs of scleroderma are puffiness of the hands and new onset of cold, white, red, or blue fingers, which is called Raynaud’s phenomenon and which will be experienced by 9 in 10 Canadians with scleroderma.
