If you are facing pulmonary fibrosis, there are communities, groups and organizations that can help you along the way.
One of the most important parts of living well with pulmonary fibrosis is connecting with others in your shoes. Check out American Lung Association support groups and ask your healthcare team about PF groups in your area.
- Online Support Communities
The American Lung Association has online communities on Inspire.com for pulmonary fibrosis patients and caregivers. Individuals register to join a community. Members can choose their level of participation and engagement. This online forum is a place for members to discuss how pulmonary fibrosis is affecting them and share their life experience with peers. It is also a great place to get tips on oxygen use and living life with PF.
- Better Breathers Club
Better Breathers Clubs teach you ways to cope with lung disease and provide pulmonary fibrosis support from others who share in your struggles. These in-person support groups give you the tools you need to live the best quality of life you can.
- Patient & Caregiver Network
Join the Patient & Caregiver Network, which is a nationwide, online patient support program providing direct access to education, support and connection to others also living with lung disease.
Talk to an Expert
Talk to our trained lung health professionals at the American Lung Association Lung HelpLine. Our service is free and we are here to help you with your questions about PF. Learn more.
Get Help to Stop Smoking
We're here for you every step of the way with tools, tips and support to quit smoking. Learn more.
Additional PF Resources to Assist with Treatment and Care
Resources exist that can connect you with more information and assist with your treatment. When you are looking for additional pulmonary fibrosis resources, make sure your information is coming from a trusted source such as the resources recommended below.
I couldn’t walk from the back door of my house to the garage without taking a break. That’s what pulmonary fibrosis did to me. I was diagnosed with idiopathic pulmonary fibrosis, also known as IPF, in 2008. IPF causes scarring and hardening in the lungs and makes it very difficult to breathe. With IPF, there is no known cause or cure. When I was first diagnosed with IPF, I was really lost. You don’t know which way to go, which way to turn, and I want to share with others what I've learned about living with IPF.
With pulmonary fibrosis, it’s just so hard to breathe. It just takes so much out of you. You feel like giving up, but you just can’t do it. You've got to stay active. You've got to keep moving. For me, that was the most important thing. If your doctor recommends oxygen therapy, you got to use it. It did so much for me, made me breathe easier. It makes it so you can be more active.
You can’t do this alone. The disease is overwhelming. It’s going to turn your life upside down, and you're going to need support to get through it. Whoever your support group is, they’ve got to be there to keep you positive, and for me, that was my wife, Marlene. The doctors are there to help you, but you're your best advocate. Do your own research, whether it be on the internet, there’s groups out there that can help you. The American Lung Association, they got me in contact with people that were also suffering from IPF. There’s answers out there but just keep asking. Even though many people you meet will never have heard of pulmonary fibrosis, you're not alone. There are great resources out there for patients and caregivers facing pulmonary fibrosis. Start your research today at Lung.org/pf.
Page last updated: January 31, 2023