Where you can find support for a disease without a cure

Carolyn Brooks
Posted 9/26/19

Each September, the Pulmonary Fibrosis Foundation observes Pulmonary Fibrosis Awareness Month.

Pulmonary fibrosis, in its simplest sense, is scarring in the lungs.

Overtime, the scar tissue …

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Where you can find support for a disease without a cure

Posted

Each September, the Pulmonary Fibrosis Foundation observes Pulmonary Fibrosis Awareness Month.

Pulmonary fibrosis, in its simplest sense, is scarring in the lungs.

Overtime, the scar tissue can destroy the normal lung and make it hard to get oxygen into your blood.

Low oxygen levels and the stiff scar tissue itself can cause you to feel short of breath, particularly in walking and exercising.

No one is certain how many people are affected by it.

There is no known cure yet.

One recent study estimated that Idiopathic Pulmonary Fibrosis (IPF), which is just one of more than 200 types of PF, affects 1 out of 200 adults over the age of 70 in the US.

This means more than 200,000 people live with it today.

About 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from IPF each year.

Those living with pulmonary fibrosis and their family members often feel confused and overwhelmed by the disease and by the lack of clear and consistent information about what PF is.

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.

Doctors usually tell you that in the worse case scenario you have 3 to 5 years to live.

Some people don’t live more than a year.

The inconsistency of the disease leads to unknown boundaries it presents for each individual.

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 it, learn to navigate the health care system more effectively and improve coping skills.

For information on a support group that meets monthly in Lexington, visit www.pulmonaryfibrosis.org/life-pf/support-groups .

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