Education is a crucial part of pulmonary fibrosis awareness
Newly diagnosed patients especially need credible information
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Raising awareness can take many forms, including education. September’s Pulmonary Fibrosis Awareness Month (PFAM) is an opportunity to educate not only the pulmonary fibrosis (PF) and interstitial lung disease (ILD) communities, but also the general public about the condition.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I was not familiar with the disease. I was hungry for information, and the more I learned, the more I wanted to know.
Education is particularly important for newly diagnosed patients and their caregivers. That’s why my wife, Susan, and I now lead separate support groups. My group, Coffee Among Friends, is open to anyone affected by PF, including patients, caregivers, spouses, partners, and family members. Susan’s group is limited to caregivers. Participants in both often want to share a diagnosis and understand what lies ahead for themselves or a loved one.
Education opportunities
Following my diagnosis, I discovered Pulmonary Fibrosis News through the writing of Kim Fredrickson. Even today, I revisit her columns and discover things I missed before. Her writing was my first glimpse of IPF from the patient perspective.
That exposure eventually led me to share my journey here in my column — both the good and the bad. I’ve written about how what started as possible pneumonia led to my IPF diagnosis, after other ILDs were ruled out. I have discussed my bilateral lung transplant in 2021 and the complications I’ve experienced, from pneumonia to bronchial stenosis. Most recently, I shared my experience with shingles and foot drop.
Around the same time I found this website, I discovered the Pulmonary Fibrosis Foundation (PFF). Their curated collection of credible educational materials was exactly what I needed.
Local education sessions hosted by PFF Care Center Network sites were also an excellent source of information. Care team members delivered presentations on all aspects of disease management. Additionally, the sessions routinely included information from a dietitian and a financial coordinator. They helped me understand the “why” behind my team’s recommendations, which made me a better patient.
PFF also offers educational videos on its website and on YouTube. Recordings of webinars sponsored by the foundation are also available on these platforms.
Every year, PFF hosts a large, multiday educational event. In even-numbered years, such as 2026, there’s a two-day virtual symposium that combines education sessions with opportunities to connect with other members of the PF and ILD communities. In many sessions, information and research updates are delivered by a panel of doctors, medical professionals, and community members. This year, the symposium will be held Nov. 12-13. Registration is now open.
In odd-numbered years, the foundation hosts an in-person summit that brings together patients, doctors, researchers, allied health professionals, and academics for educational sessions, poster sessions, and networking.
At both events, attendees can build their own schedule based on their individual interests or roles.
Education and awareness build on each other, so it’s crucial that our efforts extend beyond the awareness month and continue year-round. Personally, I look for opportunities to educate people who may have received bad information about PF. I have been met with resistance on occasion, but don’t be disheartened if that happens. The next person you talk to may be the one who asks follow-up questions or wants more information.
Together, we can improve education about PF. We must. It helps me make every breath count.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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