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What is the outlook?

Systemic sclerosis is different for everyone, so it’s hard to say how it might affect you.

Most people find that systemic sclerosis affects just a few parts of their body and comes on gradually. It may slowly get worse but usually settles down to become stable after a few years. Sometimes systemic sclerosis may progress more quickly, but other people find that it almost disappears after several years.

For some people the skin symptoms are the most troublesome, while others are affected more by poor circulation or digestive problems. Some people find their symptoms improve in summer but become worse in the winter.

A small number of people have more serious complications, for example:

  • scarring (fibrosis) of their lungs, causing shortness of breath and/or a dry cough
  • narrowing of the blood vessels of their lungs, leading to high blood pressure in their lungs (pulmonary hypertension), which may in turn strain their heart
  • kidney problems resulting in high blood pressure.

These complications are fairly rare, but we recommend regular check-ups, preferably yearly, so that any problems can be identified at an early stage.

Because your body has the ability to break down or repair extra scar tissue, you may notice some improvement in scarring – both in your skin and in your other organs – once the condition becomes less active.

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