Opinion Extra

Support groups help pulmonary fibrosis patients, families understand the disease

Close-up shot of stethoscope on table.
Close-up shot of stethoscope on table. Getty Images/iStockphoto

Each September, the Pulmonary Fibrosis Foundation (PFF) observes Pulmonary Fibrosis Awareness Month. There is no known cure for this disease at this time.

What is pulmonary fibrosis? The word “pulmonary” means lung and the word “fibrosis” means scar tissue – similar to scars that you may have on your skin from an old injury or surgery. So, in its simplest sense, pulmonary fibrosis means scarring in the lungs. Over time, the scar tissue can destroy the normal lung and make it hard for oxygen to get into your blood. Low oxygen levels (and the stiff scar tissue itself) can cause you to feel short of breath, particularly when walking and exercising.

No one is certain how many people are affected by pulmonary fibrosis. One recent study estimated that idiopathic pulmonary fibrosis, or IBF, which is just one of more than 200 types of pulmonary fibrosis, affects 1 out of 200 adults over the age of 70 in the United States — this translates to more than 200,000 people living with IPF today. Approximately 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from IPF each year.

People living with pulmonary fibrosis and their family members often feel confused, concerned and overwhelmed by the disease and by the lack of clear and consistent information about what pulmonary fibrosis is. You may have experienced this yourself. Physicians do not always have the necessary time or resources to explain the details of the disease or to provide the support that people living with PF need. The doctors usually tell you that, worse case scenario, you have 3 to 5 years to live, even though some people don’t live more than a year while others live longer. The inconsistency of the disease leads to the unknown boundaries it presents for each individual person.

This is where support groups can help those living with pulmonary fibrosis: they learn about their disease and available treatments; feel supported by others who are going through the same thing; learn to navigate the health care system more effectively and improve coping skills among other things.

There is a support group that meets monthly in Lexington. You can learn more and find a local PF support group at: pulmonaryfibrosis.org/life-pf/support-groups.

Carolyn Brooks is a pulmonary fibrosis support group leader.