Scleroderma

Understanding Scleroderma

Things to remember | Types of scleroderma | Symptoms | Cause | Diagnosis | Treatment | Self-management | Where to get help | How we can help | More to explore | Download PDF

Things to remember

  • Scleroderma is a chronic condition that affects your connective tissue
  • Treatment aims to ease the symptoms, and will vary from person to person

The millions of cells that make up your body are held together by connective tissue. It ‘connects’, or supports and holds together your joints, muscles, internal organs, skin and other body tissues.

The connective tissue of people with scleroderma has too much collagen, which causes it to become hard and tight. Scleroderma literally means ‘hard skin’.

Scleroderma is a chronic condition that results from a malfunctioning immune system.

Your immune system is designed to identify foreign bodies (e.g. bacteria and viruses) and attack them to keep you healthy. However in the case of scleroderma, your immune system mistakenly attacks your healthy tissue. Your cells start making too much collagen as if there’s an injury that needs repair.

Anyone can develop scleroderma, but it’s more common between the ages of 30 and 60, and is more common in females.

Scleroderma isn’t contagious. It can be mild, moderate or severe. There’s no cure, but it’s possible to successfully manage the symptoms.

Types of scleroderma

There are two broad classifications of scleroderma based on the amount of skin and other organs affected.

  • Localised scleroderma affects the skin. There are two types of localised scleroderma, morphea or linear. Both have distinctive signs and symptoms. Localised scleroderma can sometimes restrict normal joint movement, due to hardening of the skin over the joint.
  • Diffuse scleroderma (also called systemic scleroderma or systemic sclerosis) involves a more widespread hardening of the skin. Internal organs are also affected.

Symptoms

The symptoms vary from person to person, and will depend on the type of scleroderma you have.

Symptoms can include:

  • thickening and hardening of the skin
  • Raynaud’s phenomenon – a condition which affects the blood flow to the extremities, most often fingers and toes. It’s caused by a sudden constriction of the blood vessels
  • stiffness and pain in the muscles or joints (or both)
  • indigestion, heartburn, diarrhoea, constipation.

Cause

We don’t know what causes the immune system to malfunction, however it appears that your genes may play a role.

Diagnosis

There’s no specific test for scleroderma, so your doctor will use a range of medical tests including physical examinations, blood tests and tissue biopsies to reach a diagnosis.

Treatment

While there’s currently no cure for scleroderma, treatment can help ease your symptoms. Your doctor will develop a treatment plan based on your unique set of symptoms.

Steroid creams applied to your skin may be prescribed for localised scleroderma. A range of other anti-inflammatory medications may also be prescribed to help control your inflammation. You may be prescribed medications that will suppress your immune system, to help control the overactivity and reduce inflammation and other symptoms.

As well as seeing your GP, you will likely see a skin specialist (dermatologist) or a specialist in joint and muscle conditions (rheumatologist) regularly. Other healthcare providers such as immunologists, respiratory physicians and gastroenterologists may take part in your ongoing treatment.

Self-management

There are things you can do to manage your scleroderma including:

  • Learn about scleroderma – knowing as much as possible about your condition means that you can make informed decisions about your healthcare and play an active role in managing it.
  • Lifestyle changes – avoid exposure to cold temperatures, dress warmly and don’t smoke. These measures help manage Raynaud’s phenomenon.
  • Gentle, regular exercise – will help keep your joints moving, will strengthen your muscles and improve overall health, Talk with a physiotherapist or exercise physiologist about an exercise program that is specifically tailored to your condition and symptoms.
  • Stress management – to help you cope with the demands and challenges of their condition.
  • Aids and equipment – the effects of scleroderma can make some actions difficult, for example, using door handles or getting dressed. An occupational therapist can provide advice and solutions.
  • Eat well – eating a balanced diet can help provide you with better energy levels, help to maintain your weight, and give you a greater sense of wellbeing

Where to get help

  • Your doctor
  • Rheumatologist
  • Dermatologist
  • Physiotherapist
  • Exercise physiologist
  • Occupational therapist
  • Musculoskeletal Australia
    National Arthritis and Back Pain+ Help Line: 1800 263 265

How we can help

Call our Help Line and speak to our nurses. Phone 1800 263 265 or email helpline@msk.org.au.

We can help you find out more about:

More to explore

Download this information sheet (PDF).

The whole or part of this material is copyright to the State of Victoria and the Better Health Channel. Reproduced with permission of the Victorian Minister for Health. Users are permitted to print copies for research, study or educational purposes.

This information has been produced in consultation with and approved by: Musculoskeletal Australia