The Internet is a valuable tool for PF information, but always use caution | Use of the Internet by patients with rare diseases | Panda Anku

If you’ve spent some time on the internet, chances are you’ve found some incredibly useful and accurate information. At the same time, you’ve probably encountered misleading claims, missed an opportunity to have large sums of money transferred to you, and received bad advice.

The ability to share information over the Internet became publicly available in the 1980s. The first website was published on the World Wide Web in 1991. Google, one of the most widely used search engines, was created in 1998.

These are select milestones only and are not an endorsement or condemnation of any practice or product. The Internet, particularly website publishing, is poorly regulated.

Literature Recommendations

Know your sources

When I was diagnosed with Idiopathic Pulmonary Fibrosis in January 2017, it was the beginning of a new journey for my wife Susan and I. As I wrote in a previous column, we left the Advanced Lung Disease and Transplant Center at Inova Fairfax Hospital in Virginia, headed to the garage, and started browsing the internet from our car.

Not everything you read on the internet is true, accurate or even current. Finding a source you can trust to provide reliable information takes some work. Personally, I’ve come to believe that you can find supporting data for almost any theory on the internet.

The number of websites dedicated to a specific rare disease seems to be growing every month. Some of these are created by people of good intentions who want to share their experiences and believe they have discovered a universal cure for a condition they are experiencing. Always question the information you find and discuss it with your medical team if necessary.

Information on pulmonary fibrosis

One of the first sources of reliable information about pulmonary fibrosis (PF) I found was the Pulmonary Fibrosis Foundation (PFF) website. The PFF had curated a collection of resources for patients, caregivers, and the medical community that I found useful.

The foundation also created the PFF Care Center Network to accredit care centers that take a multidisciplinary approach to caring for patients with pulmonary fibrosis. Today, the Care Center Network has grown to 74 locations in 34 states.

patient experience

I also looked for patient experiences because I wanted to better understand what to expect in the future. I discovered Pulmonary Fibrosis News Columnist Kim Fredrickson, who was diagnosed with PF in 2014 and sadly passed away in 2019. Kim has written extensively about her experiences and has authored several books in addition to her column. Reading one of Kim’s columns was my introduction Pulmonary Fibrosis News.

With each of Kim’s columns I read, I developed a growing sense of confidence. Pulmonary Fibrosis News became another tool in my toolbox. Kim’s dedication lives on in her books and columns, which are still available online.

social media

Social media sites can be both a powerful tool and a source of bad advice. You can learn what others have experienced on their PF journey and ask questions. Social media sites dedicated to PF are also becoming an informal virtual support group.

They lose value when members of the group start giving medical advice, especially when it conflicts with the direction of a patient’s care team. One such exchange I witnessed recently was a post-transplant patient who craved a food that is generally considered unlawful. Another post-transplant patient stated that he ignored this limitation and it did him no harm.

There are restricted items on the list due to the potential risk to an immunocompromised patient after transplantation. Allowing advice on a social media site to help you rationalize a decision you are about to make is not recommended.

seek truth

It is natural for each of us on this journey to seek the truth. Regardless of your role, patients, caregivers and families have a thirst for knowledge about PF. Even today, 13 months after my double lung transplant, I want to know more. My PF was idiopathic, meaning the cause was unknown.

Look for sources you can trust. Ask your care team for sources they might recommend. On your way, find a companion with whom you can build a trusting relationship. Never be afraid to get a second or third opinion.

We are all on this journey together. We all belong to a club that we did not join voluntarily. Choose your resources wisely. I do this because it’s another way to make every breath count.


Note: Pulmonary Fibrosis News is a news and informational website about the disease only. It does not provide medical advice, diagnosis or treatment. This content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or other qualified healthcare provider with questions about any medical condition. Never disregard or delay in seeking professional medical advice because you have read something 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 stimulate discussion of issues related to pulmonary fibrosis.

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