An older man reading about symptoms from a book.

Key facts

  • Sarcoidosis is an autoimmune, systemic granulomatous disease. ILD can occur in patients with sarcoidosis, which means that there is a build-up of scarring in the lungs. This build-up can be progressive and makes it harder for oxygen to enter the blood, resulting in shortness of breath  
  • When looking for ILD in patients with sarcoidosis, your healthcare team may perform several tests to get a good understanding of your lung health
  • Sarcoidosis with ILD can get worse over time, but it is not known why some people’s disease progresses faster than others

Sarcoidosis is an autoimmune, systemic inflammatory disease. Pulmonary fibrosis can occur
in about 20% of people with sarcoidosis.

There are many different conditions associated with pulmonary fibrosis. Some are referred to as interstitial lung diseases (ILDs). ILDs with pulmonary fibrosis are a challenging group of diseases that affect the interstitium of the lung (the space between the air sacs in the lung) and lead to the formation of scar tissue.

In someone with sarcoidosis with ILD, the lungs become scarred, thickened and stiff. This makes it harder for oxygen to enter the blood and results in shortness of breath.  

Symptoms of sarcoidosis with ILD

Signs and symptoms of sarcoidosis vary, and the disease can develop gradually or suddenly and persist for years or disappear entirely. Many people with sarcoidosis have no symptoms. People may not notice the changes to their lungs at first and may think they’re becoming out of shape or tired. This can be true, but it’s important to always be aware of your body’s capabilities and notice any changes.  

Symptoms of sarcoidosis with ILD may include:

Icon showing shortness of breathing.

Shortness of breath

Icon showing coughing.

A persistent, dry cough

Fatigue and weakness

Feeling tired or weak

Chest discomfort or pain

Chest discomfort or pain

Icon showing shortness of breathing.

Wheezing

Sarcoidosis with ILD can become progressive, which means that it might get worse over time. However, currently there is no way of predicting if, or how fast, this will happen. Some people living with sarcoidosis might not have changes in their symptoms, while others might experience a faster worsening of their symptoms. It is not known why some people’s disease progresses faster than others. 

“Join a support group. If somebody puts out a hand for help, somebody will always hold it.”  

– Colin*

* Name has been changed for privacy.

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