ILD Day

What is ILD Day? 

ILD Day is a special live webinar event held each September in conjunction with Pulmonary Fibrosis Awareness Month. The webinar focuses on interstitial lung disease (ILD) with a special emphasis on exploring some of the known causes, treatments, living well, and more. Hundreds of participants gather together on Zoom to watch a live webinar presentation by a leading expert in the field of ILD, followed by a live Q&A. This year, the webinar presentation will be about genetics.

ILD Day is hosted by 11 patient organizations. Each organization has been impacted by ILD — many of their own community members are living with ILD alongside other conditions. The organizations include: Pulmonary Fibrosis Foundation, Arthritis Foundation, Foundation for Sarcoidosis Research, Myositis Association, Nori's Fight, PF Warriors, Scleroderma Foundation, Scleroderma Foundation of Greater Chicago, Scleroderma Research Foundation, Sjögren's Foundation and Wescoe Foundation for Pulmonary Fibrosis

Interstitial Lung Disease (ILD) is the umbrella term used for a large group of diseases characterized by inflammation and/or scarring in the lungs. The inflammation and scarring can injure the lungs, making it difficult to breathe and get oxygen to the bloodstream. Shortness of breath is a common symptom of ILD, along with dry persistent cough, fatigue and weakness, chest discomfort, "clubbing" of the fingertips, loss of appetite and unexplained weight loss. 

ILD
  • Pulmonary fibrosis (PF) means scarring of the lung and can be seen in many types of ILD.
  • The inflammation and scarring can injure the lungs, making it difficult to breathe and get oxygen to the bloodstream.
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  • More than 250,000 Americans are living with Pulmonary Fibrosis (PF) and ILD.
  • There are more than 50,000 new cases of ILD diagnosed annually in the U.S.
  • All interstitial lung diseases affect the interstitium, a part of the lung.
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  • The damage caused by ILD can be irreversible and may worsen over time.
  • ILD is difficult to diagnose. It may be debilitating and in some cases, incurable.

Watch webinars from previous years

Breathing Better with Supplemental Oxygen

This one-hour webinar presentation will discuss why oxygen is a physiological problem with interstitial lung disease (ILD) and why supplemental oxygen is recommended. The webinar included important info about portable oxygen containers, how to get involved in oxygen advocacy initiatives, and where to find helpful information and resources.

Progressive Pulmonary Fibrosis: What Patients Need to Know

PPF is defined by progression, which means that fibrosis builds up over time, gradually causing worsening breathlessness and the need for increasing amounts of oxygen. Monitoring your ILD and detecting PPF early is important. Some patients will progress more slowly, and others will develop respiratory failure more quickly, with some becoming very ill within months or just a few years after their diagnosis.

The Journey to Diagnosis: Process, evaluation, and your care team

Drs. Sonye Danoff and Erin Wilfong talk about how doctors recognize the disease, finding the right treatments for you, your care team and the roles they have in your journey, and the importance of advocating for yourself.

Connective Tissue Disease, Sarcoidosis, and Interstitial Lung Disease

Joyce Lee, MD, MS, and Erin M. Wilfong, MD, PhD provide an overview of interstitial lung disease and some of the diseases that can lead to interstitial lung disease (ILD). ILD is the umbrella term used for a large group of diseases characterized by inflammation and/or scarring in the lungs. Patients with sarcoidosis and some connective tissue diseases (CTD) such as rheumatoid arthritis, scleroderma, dermatomyositis, polymyositis, and Sjögren's syndrome are at higher risk for ILD. Learn more about how interstitial lung disease (ILD) is diagnosed, and how some diseases may increase the risk of developing ILD.

Shortness of breath is a common symptom of all ILDs. Other signs and symptoms include:

  • Persistent, dry cough
  • Fatigue and weakness
  • Chest discomfort
  • “Clubbing” of the fingertips (thickening of tissue under fingernails)
  • Loss of appetite
  • Unexplained weight loss
 

Some ILDs do not have a known cause. Idiopathic pulmonary fibrosis (IPF) is one of the most common forms of ILD and has no known cause. IPF occurs primarily in older adults and is limited to the lungs. IPF is a progressive disease, which means that the lung fibrosis gets worse over time. The progression is variable, with some people experiencing slower but steady progression and others developing more rapidly worsening disease.

Patients with some inflammatory and connective tissue diseases are at a higher risk for ILD. These conditions include rheumatoid arthritis, systemic scleroderma, myositis, including dermatomyositis and polymyositis (DM and PM), sarcoidosis, and Sjögren's.

View the drop-down list below for additional information on these diseases that can cause ILD.

Myositis
Rheumatoid Arthritis (RA)
Scleroderma
Sjögren's
Hypersensitivity Pneumonitis (HP)
Sarcoidosis