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Interstitial Lung Disease (ILD)

Doctor and patients Doctor and patients

Interstitial lung disease (ILD) is an umbrella term used for a large group of diseases that cause inflammation and scarring (fibrosis) in your lungs. The scarring damages the tissue in or around your lung’s air sacs and airways. 

When the tissue in or around the air sacs are stiff and scarred, your air sacs cannot fully expand. This makes it harder to inhale and get oxygen into your body. Lung damage from ILDs is often irreversible and depending on the type of ILD, it can get worse over time.


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There are several types of chronic lung disease that occur, and they impact different parts of your lungs in different ways. Understanding the type of chronic lung disease you have will help you better communicate your treatment goals with your healthcare provider for the best possible health outcomes.

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Key Facts

  • An ILD is a type of restrictive lung disease, meaning the damage in your lungs makes it harder for your lungs to fully expand or fill up with air. 
  • The most common symptom of ILD is shortness of breath.
  • Anyone can get ILD, including children. 
  • Idiopathic pulmonary fibrosis, IPF, is the most common type of ILD.

Causes

There are dozens of known causes, but an ILD can also happen without a cause.

  • Medication induced (certain medications such as chemotherapy or other medications that affect the lungs) 
  • Genetic (passed down from another family member)
  • Radiation induced (past or present radiation to your chest)
  • Environmental (exposure to animal proteins or mold)
  • Autoimmune (your immune system attacks the body)
  • Occupational (past or present exposure to dust, chemicals, fumes, and/or vapors)
  • Idiopathic (a cause cannot be found)

Lung infections and exposure to tobacco smoke may cause or worsen an ILD. 


Symptoms

The most common symptom of all ILDs is shortness of breath. Other symptoms may include a dry cough, chest discomfort and fatigue. When an ILD is more advanced, you may have clubbing or widening of the fingers or toes, weight loss, loss of appetite, low oxygen levels or lung sounds called “crackles.” 

Severe cases that are left untreated can develop life-threatening complications including high blood pressure, heart or respiratory failure.

Diagnosis

To diagnose an ILD, your healthcare provider will ask you about your family and medical history and do a physical exam. A chest X-ray or CT scan can get a better look at your lungs and help diagnose ILD. Other tests may include a blood test to check for autoimmune diseases, an arterial blood gas test or pulse oximetry can measure your blood oxygen levels, pulmonary exercise tests and lung function tests to see how well your lungs work. 

To diagnose a specific type of ILD, your healthcare provider may order more invasive procedures such as a bronchoscopy or a lung biopsy. 

Interstitial Lung Diseases

Asbestosis

Coal Workers Pneumoconiosis

Cryptogenic Organizing Pneumonia

Hypersensitivity Pneumonitis

Idiopathic Pulmonary Fibrosis 

Pulmonary Fibrosis

Sarcoidosis

Silicosis 

Treatment

Treatment for ILDs varies depending on the type of ILD diagnosed and the severity. Treatment goals include reducing symptoms, improving quality of life and slowing the disease's progression. 

Anti-inflammatory medications like corticosteroids are used to reduce inflammation in the lungs. This type of medication is prescribed if you have an autoimmune disease. 

For people diagnosed with idiopathic pulmonary fibrosis, IPF, there are two FDA medications to help slow the progression of new scarring: pirfenidone and nintedanib.

Oxygen is needed to keep every organ in your body healthy. When you are not getting enough oxygen, your healthcare provider will prescribe supplemental oxygen.

A lung transplant may be a treatment option if you have a severe and progressive form of ILD, especially IPF. To qualify for a lung transplant, you will need to go through an extensive evaluation process and if approved you will be put on a wait list. 

During the lung transplant, either one or both diseased lungs are replaced with healthy lungs from a donor. Double lung transplants are more common. If you receive one lung from a donor, your other lung will remain in your chest. If the surgery is successful, it can improve your quality of life and life expectancy.


Management

You can take steps to manage your lung health and improve your symptoms. 

Talk to your healthcare provider about enrolling in a pulmonary rehabilitation program. This program can help you meet new people, exercise and learn how to improve your lung health. Pulmonary rehab covers topics like breathing exercises, nutrition, and improving your mental and emotional health. 

If you smoke, use other tobacco products or vape, quit as soon as possible and avoid secondhand smoke. The American Lung Association offers programs to help you quit. 

Ask your healthcare provider about recommended vaccinations. 

Physical activity and exercise can boost your energy levels, improve how your body uses oxygen, and help to reduce stress, anxiety and depression. Talk to your healthcare provider about getting started with an exercise routine.

Diet and a healthy weight play an important role in managing an ILD. Some medications to treat ILDs cause side effects like diarrhea or acid reflux. Ask your healthcare provider or a nutritionist about ways to manage any challenges like bloating, acid reflux or getting short of breath. 

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Hear from Erica Farrand, MD, a Pulmonologist at the University of California, San Francisco, as well as Laura R, a patient living with idiopathic pulmonary fibrosis on this patient focused webinar from the American Lung Association. Topics covered will include symptoms, diagnosis, management and what to expect moving forward.

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Living with and managing an interstitial lung disease (ILD), like pulmonary fibrosis, can be both challenging and overwhelming. Join the American Lung Association, with support from Boehringer Ingelheim, for a patient focused webinar geared towards patients who have been living with an ILD. Hear from Erica Farrand, MD, a pulmonologist with the University of California, San Francisco, as well as Demi, a patient living with an ILD.

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