About
Interstitial Lung Disease
(ILD) Diagnosis

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We know that getting diagnosed with ILD can be a long and sometimes challenging experience, but arming yourself with information about the diagnostic process may help. Continue reading below to learn about the importance of early diagnosis, how ILD may progress over time, how to take an active role in the diagnostic process, and information about the tests used to reach a diagnosis.

Why Does Early Diagnosis Matter?

Catching ILD early is important because:

ILD may cause scarring of the lungs (commonly called pulmonary fibrosis) that progresses, which means it continues to get worse over time. You may hear this referred to as having a chronic ILD with worsening fibrosis.

As ILD progresses, the scarring of the lungs becomes worse and breathing becomes harder.

Over time, this may make even the simplest everyday activities, like walking or eating, feel challenging.

The earlier an accurate diagnosis is made, the earlier you and your healthcare provider can evaluate your management options.

Find pulmonologists
Use our locator tool to find pulmonologists, healthcare providers who specialize in lung disorders, in your area.

How to take an active role
in the diagnostic process

Get informed

Because ILD isn’t widely known, it can be easy to confuse the warning signs with other diseases. That’s why it’s important to educate yourself about the disease so you can recognize early indications of ILD and talk to your healthcare provider.

Taking an Active Role in ILD Diagnostic Process
Don’t brush off symptoms

The symptoms of ILD—like shortness of breath, a dry hacking cough, and fatigue—are common, which means people often brush them off or think that they are signs of aging. Don’t underestimate these common symptoms—they could be signs of something serious, like ILD.

Taking an Active Role in ILD Diagnostic Process
Continue looking for the right diagnosis

The common symptoms also make it easy for ILD to be misdiagnosed as other conditions, like COPD, asthma, and congestive heart failure. If you’ve been diagnosed with these conditions and have symptoms that won’t get better, it’s time to ask your healthcare provider about ILD.

Learn if your symptoms could be a sign of ILD or something else.

Connie R. Diagnosed with IPF, a type of ILD

I think there are people out there who have this disease and don’t know it … And if I ran across anyone who sounded like me, had the same symptoms or similar symptoms, I would certainly encourage them to ask their doctor about the disease. I think it’s really important that people get diagnosed and find out about management options for their disease.”

Connie R., Diagnosed
with IPF, a common
type of ILD, in 2015
Take a more active role in the diagnosis process by preparing for a conversation with your healthcare provider.

Finding a Specialist

ILD is relatively rare and not widely known, which is why it's important to find a specialist if you think you could have ILD. Pulmonologists commonly diagnose and manage the disease.

What is a pulmonologist?

A pulmonologist is a healthcare provider who specializes in lung disorders—meaning some pulmonologists may have more experience diagnosing and managing ILD than other types of specialists.

If you already have a team of specialists, a pulmonologist can work together with your healthcare team to provide expertise on how to diagnose lung issues, like ILD. For example, some rheumatologists will help people with an autoimmune disease diagnose and understand their ILD in collaboration with a pulmonologist. If you are already seeing a rheumatologist, talk to him or her about ILD.

What to look for in a pulmonologist

When searching for a pulmonologist, try to find someone who has experience with ILD. There are medical centers that specialize in lung diseases and are likely to have teams of pulmonologists with the expertise necessary to diagnose ILD.

Get help starting the conversation with your pulmonologist
After finding a pulmonologist, the next step is to prepare for a conversation with him or her. Create a personalized discussion guide to help start the conversation.

Tests Used to Diagnose
Interstitial Lung Disease

It can be helpful and reassuring to know what to expect during your healthcare provider’s appointment. Here are some tests your pulmonologist may use to diagnose ILD.

High-Resolution Computed Tomography (HRCT) Scan of the Lungs

Offers a detailed lung image to help your physician identify scar tissue, diagnose, or rule out ILD.

Lung Function Tests

Measures breathing while you inhale and exhale out of a tube.

Blood Test for Autoimmune Diseases

Because ILD can be caused by autoimmune diseases, your healthcare provider may perform a blood test to check for signs of an undiagnosed autoimmune disease.

Bronchoscopy with Broncho-alveolar Lavage

Your healthcare provider may use a thin, flexible tube with a small camera attached to the end to examine the airways in the lungs and collect cells from the lungs to be examined.

Chest X-ray or chest MRI

Provides an image of the structures in your chest, including your lungs. May be used to check for scar tissue.

Exercise Test

One type of exercise test is the “6-minute walk test”; during this exercise test, your healthcare provider will have you walk to determine how well your heart and lungs function during physical activity.

Pulse Oximetry

Involves the use of a small sensor placed on your fingertip or earlobe. It uses light to measure the amount of oxygen in your blood.

Surgical Lung Biopsy

If necessary, during a lung biopsy, your healthcare provider will take samples of lung tissue and then examine them under a microscope to help rule out other diseases or diagnose ILD.

Arterial Blood Gas

If necessary, your healthcare provider will perform a blood test that measures the amount of oxygen and other gases present in the blood.

Echocardiogram

Uses a handheld wand to capture high-frequency sound waves that show the heart’s movement.

What’s the next step?
Learn about your options for managing chronic ILD with worsening fibrosis.
We know how lost you might feel while searching for answers about ILD and how it may progress over time, but we’re here to support you.
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