Have you explored all Pulmonary Fibrosis News has to offer?

There’s an Instagram account called “iwastodayyearsold_” (I was today years old) dedicated to sharing unusual discoveries people cannot believe they missed until now. Some of the information is insightful and makes me think, “How could I not have known that?”

What if there were a similar resource for patients in the pulmonary fibrosis (PF) community with interesting but not necessarily apparent information? When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, I quickly realized I had a lot to learn about this disease. I really could’ve used something like “iwastodayyearsold_” geared toward PF.

In recent conversations with friends who read my column, I asked about what else they read when they visit Pulmonary Fibrosis News (PFN). I was surprised that not everyone was familiar with the full value offered by this Bionews publication.

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Here at PFN, you can leverage multiple perspectives to assist you on your journey. For example, my fellow columnists provide several different points of view.

Christie Patient writes from a caregiver perspective in “Courage to Care.” Christie shares her experiences caring for her mother, Holly, before and after lung transplant, and how her role has changed since Holly’s surgery.

Charlene Marshall writes about her patient experience as a young professional in “Living With IPF.” She shares how her life, including her career, has changed since her diagnosis in 2016.

Ann Reynoso shares her patient experience in “Modern Day Mutant.” Diagnosed with lymphocytic interstitial pneumonia and pulmonary fibrosis in 2019, she’s now an advocate for those with disabilities and those dealing with healthcare inequalities.

While I hope you continue reading my column, “Make Every Breath Count,” I want everyone to be aware of the other great columnists here at PFN. My perspective is different from that of my colleagues. It’s been more than seven years since my IPF diagnosis, and almost three years since my bilateral lung transplant.

But wait, there’s more

A discussion of PFN‘s resources would be incomplete if I didn’t mention the science content. A team of science writers with advanced degrees help readers understand the latest scientific developments affecting our community. Content ranges from research into potential causes of IPF to the latest information on clinical trials and drug development. These articles aren’t just for scientists; they’re written in a way that’s easy to understand and intended for anyone interested in learning about pulmonary fibrosis.

If you have questions about life with PF, then you’ll find the PFN Forums useful for engaging with other patients and caregivers. Forum members have different backgrounds and join the conversations for various reasons. Some are seeking a sense of belonging, while others are in search of specific tips. If you have a question relevant to your journey, the forums may be the right spot for you.

Of course, there are other sites I regularly visit as well to find reliable information. The Pulmonary Fibrosis Foundation is a great source of educational materials (often available in multiple languages), information on locating medical care and support groups, a community registry, and a proven advocacy program.

The National Institutes of Health provides a wide range of research materials on almost any health topic, available at no charge. Additionally, it publishes a searchable database of clinical trials to assist people in locating research programs they may be eligible to join.

Here at PFN, there’s more than meets the eye. I encourage you to take some time and explore the columns, news articles, and forums. Supporting each other on this journey is how we can 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.