What is systemic sclerosis?

Systemic sclerosis, commonly known as scleroderma, is a rare autoimmune connective tissue disease that can affect the skin, blood vessels, and internal organs. The name scleroderma means “hard skin,” though the condition can involve much more than the skin.

Symptoms and disease progression can vary widely between individuals. Because of this variability, and the overlap with other conditions, diagnosis can take time.

Raynaud’s phenomenon causes the fingers and toes to change colour, typically turning white, then blue, then red, in response to cold or stress. It happens because blood vessels temporarily narrow, reducing blood flow.

Raynaud’s can occur on its own (primary Raynaud’s), which is common and not linked to any underlying disease. However, when it occurs alongside systemic sclerosis (secondary Raynaud’s), it tends to be more severe and can cause tissue damage over time. Around 95% of people with systemic sclerosis experience Raynaud’s, and for many it is the first symptom to appear, sometimes years before a diagnosis.

If you experience Raynaud’s alongside other symptoms such as skin changes or joint pain, it may be worth discussing with your doctor.

Systemic sclerosis can overlap with other autoimmune conditions, including lupus, Sjogren’s syndrome, and inflammatory myositis. People with overlap syndromes may experience a broader range of symptoms and can sometimes find that resources focused on a single condition do not fully reflect their experience.

A condition that can touch every part of daily life

Systemic sclerosis can be physically and emotionally challenging. It may affect appearance, mobility, energy, digestion, breathing, and daily function in ways that shift over time. Because the condition can change gradually, people often find themselves adapting continuously rather than reaching a stable point.

Skin changes and Raynaud’s can affect how people feel about their appearance and their ability to carry out everyday tasks. Fatigue is common and can be difficult for others to understand, particularly when it is not always visible. Digestive symptoms, breathlessness, and joint stiffness can each add further complexity to daily life.

The emotional impact of living with a condition that is rare, variable, and sometimes poorly understood by others should not be underestimated. Uncertainty about progression can be one of the hardest aspects to manage, and caregivers and family members often carry a significant weight alongside the person living with the condition.

Where is research heading?

Research in systemic sclerosis is active and evolving. Current focus areas include:

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