The next step is to start a conversation with your healthcare provider about your potential risk for ILD. Make the most of that conversation by creating a personalized doctor discussion guide.
Are you at risk for ILD?
If you’re experiencing signs or symptoms that could be related to interstitial lung disease (ILD), or you’ve been diagnosed with a condition that can be associated with ILD, this page can help you learn more about your potential risk. Please note, this page is not a diagnostic tool; and this page is for informational purposes only. Consult your healthcare provider for more information.
Could it be ILD?
Only your doctor can diagnose ILD, so be sure to talk to them about these signs and symptoms. In some instances, nonspecific symptoms, such as a persistent cough, shortness of breath, and/or fatigue, can be signs of ILD, a potentially serious lung disease that may cause scarring (fibrosis) of the lungs. Over time, this scarring causes the lungs to become thick and stiff, making it difficult to breathe.
ILD has symptoms that are similar to those of more common conditions—like COPD, asthma, and congestive heart failure—sometimes making it tough to recognize. Get the facts about ILD and learn how to take an active role in your health.
I was convinced it was still just a cold that had settled in my chest. My PCP agreed, and I was treated with over-the-counter meds for a cough and sent on my way. Months passed. I found I’d actually gotten used to the coughing.
Kay B., living with idiopathic pulmonary fibrosis (IPF), a type of ILD
Kay B., living with idiopathic pulmonary fibrosis (IPF), a type of ILD
How much do you know about ILD?
Keep in mind, many types of ILD are considered rare. Your doctor will be able to help determine if what you're experiencing could be a sign of ILD.
Fact vs. Fiction
Show what you know about ILD.
1. Anyone can get ILD.
1. Anyone can get ILD.
Fact
1. Anyone can get ILD.
Many factors can increase the risk of or cause ILDs, including autoimmune diseases,
exposure to certain harmful substances, and medications, as well as unknown factors.
2. The severity—and even type of ILD—varies from person to person.
2. The severity—and even type of ILD—varies from person to person.
Fact
2. The severity—and even type of ILD—varies from person to person.
Some people may notice worsening symptoms, while others may not notice any signs of
progression for a long time.
3. One of the most common symptoms of ILD is shortness of breath.
3. One of the most common symptoms of ILD is shortness of breath.
Fact
3. One of the most common symptoms of ILD is shortness of breath.
Another common symptom is a persistent, dry cough. Additionally, over time, weight loss
and fatigue may also occur.
4. ILD can lead to pulmonary fibrosis that may continue to get worse over time.
4. ILD can lead to pulmonary fibrosis that may continue to get worse over time.
Fact
4. ILD can lead to pulmonary fibrosis that may continue to get worse over time.
ILD may cause pulmonary fibrosis, which means scarring of the lungs. This scarring can
be progressive, meaning it may get worse over time.
Taking an Active Role in Your Health
Step 1: Learn About ILD
Interstitial lung disease (ILD) refers to a group of over 200 chronic lung disorders characterized by inflammation and/or scarring of the lungs. When it involves scarring of the lungs, it is also known as pulmonary fibrosis. The severity—and even type of ILD—varies from person to person.
If you are wondering if you could have ILD, learn more about what it is, its connection to pulmonary fibrosis, how it may progress, and more.
Step 2: Don’t Dismiss the Signs and Symptoms
The signs and symptoms of ILD may progress over time and may be an indication that the disease is getting worse. It’s important to talk with your healthcare team about your symptoms and tell them about any changes you notice.
Signs and symptoms of ILD may include:
- Shortness of breath
- Persistent, dry cough
- Fatigue
- Unexplained weight loss
- Clubbing or widening of the fingertips
One of the most common symptoms of ILD is shortness of breath. Shortness of breath may be mild at first and only occur during physical activity. If ILD progresses, breathing problems will gradually worsen over time.
Listen to your lungs. It’s important to tune in to your body and take note of any signs or symptoms you may experience. Knowing the warning signs can help you identify ILD and start the conversation with your doctor.
Use the Personal Symptom Tracker to keep track and record any signs or symptoms you may experience and share what you learn with your doctor.
Step 3: Start the Conversation with Your Doctor
An important step in identifying ILD is starting a conversation with your doctor. Ask your doctor if you are at risk for ILD and always mention any symptoms you may experience. One of the ways your doctor may begin to identify a problem is by listening for crackling sounds in your lower lungs.
Catching ILD early is important
Catching ILD early
is important because, for some, ILD may cause scarring of the lungs that progresses, meaning it continues to get worse over time.
is important because, for some, ILD may cause scarring of the lungs that progresses, meaning it continues to get worse over time.
As pulmonary fibrosis progresses, the scarring of the lungs
becomes worse
As pulmonary fibrosis progresses, the scarring of the
lungs becomes worse and breathing becomes harder.
The sooner an accurate diagnosis is made, the earlier you can
take action
The sooner an accurate diagnosis is made,
the earlier you can take action and work with your doctor to evaluate your disease management options.
the earlier you can take action and work with your doctor to evaluate your disease management options.
The Personalized Doctor Discussion Guide can help you take a more active role in the diagnosis process by preparing for a conversation with your doctor.
Step 4: Continue Looking for the Right Diagnosis
ILD is relatively rare, and quite often difficult to diagnose, requiring a range of tests. The nonspecific symptoms also make it easy for ILD to be misdiagnosed as other conditions, like COPD, asthma, and congestive heart failure.
If you have been diagnosed with one of these conditions and continue to experience symptoms—or if you have been prescribed medications for a respiratory disease or a cough and are not getting relief from these medications—ask your healthcare provider about ILD.
A pulmonologist is a healthcare provider who specializes in lung disorders—pulmonologists may have more experience diagnosing and managing ILD than other types of specialists. Use our locator tool to find pulmonologists near you.
Are you at risk for ILD?
Certain factors and systemic illnesses are known to cause ILD. If you’ve been exposed to or diagnosed with these, you may be at risk for developing ILD.
For instance, ILD can be caused by certain systemic disorders, like mixed connective tissue disease, myositis, rheumatoid arthritis, sarcoidosis, scleroderma, Sjögren’s syndrome, and others. It can also be caused by certain medications and exposure to environmental and/or occupational factors, like asbestos or silica dust. Sometimes, the cause is unknown. No matter the cause, ILD may lead to lung scarring called pulmonary fibrosis, which may make breathing difficult. That’s why it’s important to talk with your doctor about your risk. Only your doctor can talk to you about your potential risk.
Continue scrolling for resources that can help you gain more clarity about what ILD is, understand the importance of early diagnosis, and learn how to start a productive conversation with your doctor.
Rather than focus on the things that I have lost to this disease, I want to focus on living life each day.
Mary Ann E., diagnosed with
scleroderma-associated ILD in 2010
Mary Ann E., diagnosed with scleroderma-associated ILD in 2010
How much do you know about ILD?
Keep in mind, many types of ILD are considered rare. Your doctor will be able to help determine if what you're experiencing could be a sign of ILD.
Fact vs. Fiction
Show what you know about ILD.
1. People with some inflammatory and connective tissue diseases are at risk for developing ILD.
1. People with some inflammatory and connective tissue diseases are at risk for developing ILD.
Fact
1. People with some inflammatory and connective tissue diseases are at risk for developing ILD.
People with some inflammatory and connective tissue diseases are at risk for developing
ILD. These conditions include rheumatoid arthritis, systemic sclerosis (scleroderma),
myositis, sarcoidosis, and Sjögren’s syndrome.
2. ILD is one of the most common lung problems linked to rheumatoid arthritis.
2. ILD is one of the most common lung problems linked to rheumatoid arthritis.
Fact
2. ILD is one of the most common lung problems linked to rheumatoid arthritis.
Up to 30% of people with rheumatoid arthritis may develop ILD, which may worsen over
time.
3. Interstitial lung disease is a common finding in patients with systemic sclerosis (scleroderma).
3. Interstitial lung disease is a common finding in patients with systemic sclerosis (scleroderma).
Fact
3. Interstitial lung disease is a common finding in patients with systemic sclerosis (scleroderma).
Up to 80% of people with scleroderma have some evidence of lung fibrosis.
4. Sarcoidosis is an inflammatory disease that can affect many organs of the body, including the lungs.
4. Sarcoidosis is an inflammatory disease that can affect many organs of the body, including the lungs.
Fact
4. Sarcoidosis is an inflammatory disease that can affect many organs of the body, including the lungs.
Around 20% of people with sarcoidosis in the lungs develop pulmonary fibrosis, which may
worsen over time.
Taking an Active Role in Your Health
Step 1: Learn About ILD
Interstitial lung disease (ILD) refers to a group of over 200 chronic lung disorders characterized by inflammation and/or scarring of the lungs. When it involves scarring of the lungs, it is also known as pulmonary fibrosis. The severity—and even type of ILD—varies from person to person.
Step 2: Understand the Signs and Symptoms
It’s easy to overlook the signs and symptoms of ILD because they can be similar to those of more common diseases.
Signs and symptoms of ILD may include:
- Shortness of breath
- Persistent, dry cough
- Fatigue
- Unexplained weight loss
- Clubbing or widening of the fingertips
One of the most common symptoms of ILD is shortness of breath. Shortness of breath may be mild at first and only occur during physical activity. If ILD progresses, breathing problems will gradually worsen over time.
Listen to your lungs. It’s important to tune in to your body and take note of any signs or symptoms you may experience. Knowing the warning signs can help you identify ILD and start the conversation with your doctor.
Use the Personal Symptom Tracker to keep track and record any signs or symptoms you may experience and share what you learn with your doctor.
Step 3: Start the Conversation with Your Doctor
An important step in understanding your risk for ILD is starting a conversation with your doctor. Visit your doctor for regular checkups, so they can monitor your lungs. Ask about the impact your current condition could have on your lungs and always mention any symptoms you may experience.
Catching ILD early is important
Catching ILD early
is important because, for some, ILD may cause scarring of the lungs that progresses, meaning it continues to get worse over time.
is important because, for some, ILD may cause scarring of the lungs that progresses, meaning it continues to get worse over time.
As pulmonary fibrosis progresses, the scarring of the lungs
becomes worse
As pulmonary fibrosis progresses, the scarring of the
lungs becomes worse and breathing becomes harder.
The sooner an accurate diagnosis is made, the earlier you can
take action
The sooner an accurate diagnosis is made,
the earlier you can take action and work with your doctor to evaluate your disease management options.
the earlier you can take action and work with your doctor to evaluate your disease management options.