Scleroderma awareness

Overview

Scleroderma (skler-oh-DER-muh) is a rare, long-term autoimmune condition where the body's immune system attacks its own tissues, causing the skin and connective tissues to become hard, thick, and tight. It can also affect internal organs like the lungs, heart, kidneys, and digestive system.

No, scleroderma is considered rare. It affects about 1 in 10,000 people in the UK.

It most commonly affects women between the ages of 30 and 50, but men and children can also develop it.

Symptoms

Common symptoms

• Thickening and tightening of patches of skin (often on fingers, hands, face)
• Raynaud's phenomenon – fingers or toes turning white or blue in the cold
• Heartburn or difficulty swallowing due to acid reflux
• Joint pain and stiffness
• Shortness of breath or dry cough if lungs are affected
• Small, red spots on the skin called telangiectasias

Symptoms in children

• Scleroderma in children is rare but can cause joint contractures (stiff joints), skin hardening, and growth problems.
• Children may also have Raynaud's phenomenon and digestive issues.

Symptoms in older adults

• In older adults, scleroderma may be milder but can still cause significant skin tightening and complications like lung or heart problems.
• They may also have age-related conditions that complicate management.

Causes

Main causes

• The exact cause is unknown, but it is believed to be an autoimmune reaction where the immune system mistakenly attacks healthy tissue.
• Genetics may play a role, as it sometimes runs in families.
• Environmental factors, such as exposure to certain chemicals or viruses, may trigger the condition in people who are predisposed.

Risk factors

• Being female (especially between ages 30-50)
• Family history of autoimmune diseases
• Exposure to silica dust, certain industrial chemicals, or some medications (rare)

When to see a doctor

See a doctor urgently if:

• Sudden severe symptoms like chest pain, breathlessness, or very high blood pressure (call emergency)

Book a routine appointment if:

• If you notice persistent skin thickening, especially on fingers, Raynaud's phenomenon that is bothersome, or chronic heartburn.

Diagnosis

Your doctor will take a detailed history and do a physical exam. They may refer you to a specialist (rheumatologist). Diagnosis is based on symptoms, blood tests, and sometimes a skin biopsy.

Tests that may be done

• Blood tests for autoantibodies (like anti-centromere or anti-Scl-70)
• Skin biopsy – a tiny piece of skin is examined under a microscope
• Lung function tests and chest X-ray or CT scan
• Echocardiogram to check heart function
• Esophageal manometry or upper endoscopy for digestive symptoms

What to expect at your appointment

The process can take several months as symptoms develop slowly. Your specialist will coordinate a team of doctors if internal organs are involved.

Treatment

There is no cure, but treatments focus on managing symptoms, preventing complications, and improving quality of life. Your healthcare team will tailor a plan for you.

Self-care at home

• Protect hands and feet from cold to manage Raynaud's – wear gloves, warm socks
• Moisturise skin regularly to prevent dryness and cracking
• Eat small, frequent meals to ease acid reflux
• Stay active with gentle exercise (walking, swimming) to maintain joint flexibility

Medical treatments

Treatments may include medications to lower blood pressure, manage reflux, reduce inflammation, or suppress the immune system. Physical and occupational therapy can help maintain hand function. For lung or kidney complications, specific therapies are used. Always discuss options with your rheumatologist.

When is surgery considered?

Surgery is rarely needed but may be considered for very severe fingertip ulcers that do not heal, or for joint contractures that limit function.

Living with this condition

Living with scleroderma means taking care of your skin and joints, managing symptoms like Raynaud's and reflux, and staying in close touch with your medical team. Many people adapt well and continue working and enjoying family life.

Lifestyle tips

• Avoid smoking – it worsens Raynaud's and lung problems
• Practice stress management techniques like deep breathing or mindfulness
• Protect skin from injury and sun exposure

Diet and exercise

A balanced diet helps maintain strength. If you have reflux, avoid spicy foods, caffeine, and large meals before bed. Gentle exercise like yoga, stretching, or walking can keep joints flexible and improve circulation. Talk to your doctor before starting a new exercise routine.

Mental health and emotional wellbeing

Living with a chronic condition can be emotionally challenging. Anxiety and depression are common. It's important to talk to your doctor about your feelings and consider counselling or support groups. If you ever feel overwhelmed, reach out for crisis support.

Prevention

There is no known way to prevent scleroderma because the exact cause is not known. However, early diagnosis and treatment can help prevent serious complications.

Vaccines

It's a good idea to stay up to date with recommended vaccines, including flu and pneumonia vaccines, to reduce the risk of infections that could worsen your condition.

Screening programmes

If you have scleroderma, your doctor will monitor you regularly with blood pressure checks, lung function tests, and other screenings to catch any organ involvement early.

Complications

If left untreated

• Progressive skin tightening that can limit movement
• Lung scarring (pulmonary fibrosis) leading to breathing difficulty
• High blood pressure in the lungs (pulmonary hypertension)
• Kidney crisis (scleroderma renal crisis) causing rapid kidney failure
• Digestive problems like malnutrition from poor absorption

Long-term outlook

With early and ongoing care, many people with scleroderma manage their symptoms well and have a good quality of life. The outlook depends on how internal organs are affected. Regular follow-up and a positive, proactive approach make a big difference.

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