Interstitial lung disease (ILD)

Lung fibrosis (also known as interstitial lung disease) is one of the two key ways in which scleroderma may affect your lungs.1 Learn what it is and what to look out for.

3 min read

Woman with scleroderma standing outside

ILD happens because fibrosis (scarring) affects the little air sacs in the lungs (the alveoli). This scarring means the lungs become stiff. This can stop the lungs working as well as they should.1 The alveoli are essential for getting the oxygen you inhale into the blood and removing carbon dioxide so that it can be breathed out. 

Symptoms of lung fibrosis may include:1,2

  • Getting out of breath doing simple tasks like climbing stairs.
  • Feeling very tired when going about your normal day.
  • Dry cough that you can’t get rid of.
  • Difficulty taking deep breaths.
  • Feeling dizzy.

For most people with scleroderma lung problems, their condition remains relatively stable, or gradually declines over many years.1

Over time, 1 in 4 people with scleroderma might develop noticeable lung symptoms that affect daily activities. In very severe cases, these symptoms can affect how long they live, but this does not happen to most people.3,4

The earlier ILD is caught, the more likely it is that you will have a better response to treatment.

Contact your doctor

 Make sure you tell your doctor if you get any of the symptoms above. 

The facts:

35 %
of people with limited cutaneous scleroderma will develop lung fibrosis.5
53 %
of people with diffuse cutaneous scleroderma develop lung fibrosis.5
1 in 4
people with severe scleroderma might develop serious lung symptoms that affect how they go about their life.3,4