If you or someone you care about has been diagnosed with idiopathic pulmonary fibrosis, you may have a range of emotions. It’s common for patients and loved ones to feel fear, anxiety, and sadness. Some people also feel helpless. Although treatment may decrease symptoms, there is currently no cure for pulmonary fibrosis. But research continues, which will one day hopefully lead to a cure.
According to the American Lung Association, the number of people that have pulmonary fibrosis is higher than once thought. The National Institutes of Health, estimates that over 100,000 in the United States have pulmonary fibrosis. Roughly three million people worldwide are living with pulmonary fibrosis. But that number may be even higher since pulmonary fibrosis may occur along with other vascular diseases and go undiagnosed.
Although pulmonary fibrosis is not as rare as once thought, most people have never heard of the condition. In fact, many patients are unaware of the disease until they are diagnosed. There is no widespread awareness for pulmonary fibrosis and government funding could be better. Becoming an advocate is one way you can make a difference. Below are several things you or a loved one can do to get involved.
Join the Lung Action Network
Consider joining the Lung Action Network through the American Lung Association. Once you join the network, you’ll receive emails regarding opportunities to contact your state and federal government officials about lung health policies and issues. By becoming an advocate, your voice can be heard regarding policies that may help prevent lung disease and save lives.
Join in the Pulmonary Fibrosis Foundation walk
The Pulmonary Fibrosis Foundation holds annual walks in a few major cities to raise money and awareness. Walks are usually held in New York, Chicago, and Washington D.C.If you are unable to attend a walk in one of the cities listed above, you can register for a virtual walk and complete the miles at a route close to home.
Participate in Pulmonary Fibrosis Awareness Month
September is pulmonary fibrosis awareness month. It’s a great time to get involved. Consider following the Pulmonary Fibrosis Foundation on Twitter, Instagram, and Facebook. Create awareness on your social media pages by sharing a post by the foundation or other newsworthy item related to pulmonary fibrosis.
Create a Fundraising Event
If you are interested in holding your own event, there are plenty of options. Host a golf tournament, marathon, or rummage sale to benefit pulmonary fibrosis research. If you prefer, consider hosting a table at a health fair or community event to spread the word about pulmonary fibrosis. Information and tools for planning a fundraising event are available through websites, such as the American Lung Association and the Pulmonary Fibrosis Foundation.
Don’t underestimate the power of advocacy and raising awareness. Advocacy efforts from patients, friends, and family play a big part in funding and policy outcomes. Each time we raise awareness, it brings us one step closer to a cure.
Content written by Dr. Jeremy Feldman, an expert in Idiopathic Pulmonary Fibrosis, with contributions by MaryAnn DePietro, B.S. CRT, a licensed respiratory therapist.